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Autoantibodies and ANAs

Gingergrrl

Senior Member
Messages
16,171
I have positive lip biopsy for Sjogren (focus score = 2) and Anti-SSA autoantibody in blood present. Do I have now Primary Sjogren (as given by my rheumatologist) or do I still also have ME/CFS? Nobody seem to be able giving answers :(

It's a great question and I think the answers will become clearer with time. Will you be doing any treatments specifically for Sjogrens now that you have an official diagnosis for it?

Not having a clear diagnosis or answers was torture for me and I really relate to this. Every doctor (in 2014, 2015 and early 2016) was saying that I clearly had Hashimoto's Disease, POTS, and then MCAS but that there was something additional causing my extreme muscle weakness and breathing weakness but they could not figure out what it was?!

I had been hospitalized twice, and had lots of tests that were abnormal, but nothing clarified the diagnosis (or even that it was due to solid autoimmunity) until I did a specific blood panel from Mayo which showed I had the LEMS autoantibody.

But the years of not knowing and, one doctor telling me I could end up on a ventilator if it did not plateau or reverse itself, were pure agony b/c I couldn't advocate for treatments if I didn't even know what was wrong!

I had been treating symptoms (for thyroid, POTS, etc) which did provide some minimal relief but it was like a band-aid until we figured out what was going on (and we still do not know 100% and I just have to live with the "not knowing"). I am hoping that with more time and treatments, you will get a clear answer and am sending my best wishes.

* Edited for typos and clarity
 
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Aubry

Senior Member
Messages
189
I only got Plaquenil @Gingergrrl since my blood chemistry is normal (CRP, ESR, ...). I do also have confirmed Small Fiber Neuropathy (positive biopsy 2 izv/mm). But rheumatologists are stupid I think and they don't wanna see connections with 'systemic' Sjogrens...
 

manasi12

Senior Member
Messages
172
I only got Plaquenil @Gingergrrl since my blood chemistry is normal (CRP, ESR, ...). I do also have confirmed Small Fiber Neuropathy (positive biopsy 2 izv/mm). But rheumatologists are stupid I think and they don't wanna see connections with 'systemic' Sjogrens...
I'm in the same boat. I have severe POTS and SS-A antibody. I too have normal ESR and CRP. But every rheumatologist wants me to worsen enough to warrant treatment. They are giving me plaquenil and azathioprine which I don't want to take . Do you get PEM?
 

Aubry

Senior Member
Messages
189
I'm in the same boat. I have severe POTS and SS-A antibody. I too have normal ESR and CRP. But every rheumatologist wants me to worsen enough to warrant treatment. They are giving me plaquenil and azathioprine which I don't want to take . Do you get PEM?

Yes I do get PEM. I don't know all anymore. Prof. Meirleir says I don't have real Sjogrens... He replied on my last consultation that the inflammation they have found in my lip biopsy (B-cells and T-cell aggregates) are same inflammations as in my gut and the rest of my body (he is still very into the gut hypothesis in general). I don't know what he will say next when I show him also my positive SFN results ... Anyway, what maybe brings some hope is that Filgotinib is officially tested now for Sjogrens Syndrome (phase 2 is done, results soon). And Meirleir wants to try Filgotinib for ME because it could "heal" the gut in many according to his opinion... We will see I guess.

In the meanwhile I try plaquenil now (if I don't feel difference in 3 months, I will stop plaquenil). And my local neurologist is trying to achieve some IVIG trial for couple months, because he said his collegea doctor friend has got it at university for only SFN (no other diseases).
 

Gingergrrl

Senior Member
Messages
16,171
They are giving me plaquenil and azathioprine which I don't want to take

Azathioprine (Imuran) is hard-core if you have other options. I had a Neuro recommend it to me in 2016 but my main doctor felt it was too dangerous (in my case) to wipe out my immune system and felt that high dose IVIG was the right path for me.

And my local neurologist is trying to achieve some IVIG trial for couple months, because he said his collegea doctor friend has got it at university for only SFN (no other diseases).

This would be great if you can trial IVIG and I have known of many people who were prescribed it for SFN without another diagnosis.
 

manasi12

Senior Member
Messages
172
@Gingergrrl ..yes we too think imuran is too dangerous considering that I'm already very much prone to infections. Wondering if I'm immunodeficient too. IVIG is worth trying but I still don't have any doctor who will monitor me with IVIG . I'm scared due to my MCA and one APS antibody. I so wish that we have a dr like Dr Kauffman here !!
Do you have any idea if SCIG can be started directly without first trying IVIG?
 
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Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl ..yes we too think imuran is too dangerous considering that I'm already very much prone to infections. Wondering if I'm immunodeficient too.

Have you had any tests for immune deficiency like IGG subclasses or lymphocyte subset panel?

I so wish that we have a dr like Dr Kauffman here !!

I agree and I wish I could clone him :confused:

Do you have any idea if SCIG can be started directly without first trying IVIG?

I have known many people who did SCIG as their treatment and never did IVIG at all (especially for immune deficiency b/c it is smaller doses). There are several excellent IVIG groups on FB (private groups) where I used to ask questions back in 2016 and can give you the info if it would be helpful. Those groups had people from all over the world, who were doing every form of IVIG & SCIG, for every possible diagnosis and they were very knowledgeable and helpful.
 

wigglethemouse

Senior Member
Messages
776
I have positive lip biopsy for Sjogren (focus score = 2) and Anti-SSA autoantibody in blood present. Do I have now Primary Sjogren (as given by my rheumatologist) or do I still also have ME/CFS? Nobody seem to be able giving answers :(
There was a great paper this year that details Sjogrens is so much more than dry eys and dry lips. Give it a read to understand the overlap with ME. Most websites seem useless in describing SS.

Paper : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6321004/pdf/ijms-19-03953.pdf
Thread : https://forums.phoenixrising.me/threads/kynurenine-pathway-and-sjogrens-syndrome.75239/
 

manasi12

Senior Member
Messages
172
Have you had any tests for immune deficiency like IGG subclasses or lymphocyte subset panel
Not yet.. I'm looking for a reliable laboratory here. No doctor has ever mentioned it but I guess it may be worth testing.
 
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manasi12

Senior Member
Messages
172
I have known many people who did SCIG as their treatment and never did IVIG at all (especially for immune deficiency b/c it is smaller doses). There are several excellent IVIG groups on FB (private groups) where I used to ask questions back in 2016 and can give you the info if it would be helpful. Those groups had people from all over the world, who were doing every form of IVIG & SCIG, for every possible diagnosis and they were very knowledgeable and helpful.
Thanks for your prompt response !!
I'm on a hunt for a doctor who knows POTS and willing to try SCIG. No rheumatologist wants to prescribe IVIG or SCIG here although they think it might help.
Facebook group will be very helpful as I have too many questions that might have been discussed there.
 

Gingergrrl

Senior Member
Messages
16,171
Not yet.. I'm looking for a reliable laboratory here.

What country are you in?

No rheumatologist wants to prescribe IVIG or SCIG here although they think it might help.

I had the same experience that multiple neuros and a rheumatologist told me that they believed that high dose IVIG would help me but none of them were willing to prescribe it. I think partially b/c they were not willing to take on the insurance battle and partially b/c they were too afraid of the anaphylaxis risk (at that time for me). Luckily my main doctor was not phased and got it approved for me and I never had a single allergic reaction to IVIG in the two years that I did it (Gamunex).

Facebook group will be very helpful as I have too many questions that might have been discussed there.

The two FB groups are called "IVIG changed my Life" and "Intravenous immunoglobulin (IVIg) Support Group". They are both private groups where you have to request to join but cannot imagine that you would not be approved. I posted there a lot back in 2016 and they are a wealth of information from people all over the world with endless different diagnoses and experiences.
 

manasi12

Senior Member
Messages
172
@Gingergrrl.. I'm in India. Thanks a lot for names of these fb groups. It never occurred to me that there are groups devoted to IVIG though I'm member of several other groups for my diagnoses.
But without a doctor who can understand my all co-morbidities, this seems to be quite risky at least time being.
 
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Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl.. I'm in India. Thanks a lot for names of these fb groups. It never occurred to me that there are groups devoted to IVIG though I'm member of several other groups for my diagnoses.

I'm glad I could help and I hope you will get some good feedback and answers in the IVIG groups like I did back in 2016.

But without a doctor who can understand my all co-morbidities, this seems to be quite risky at least time being.

I agree, it is definitely not something that you could do without a doctor prescribing and monitoring it. But it is possible to ask in the IVIG groups if anyone knows of a doctor in India and get more detailed feedback. I found those groups (while in English) had people posting from literally all over the world.
 

Aubry

Senior Member
Messages
189
Problem is what can you do with a Sjogren Diagnosis? I feel rheumatologists don't know a lot about it. They only gave me Plaquenil ... I read in advanced cases (bloodwork, not symptoms...) they give corticoids or rituximab. But that is about it. I want to try IVIG soon.
 

Belgiangirl

Senior Member
Messages
108
Hi Aubry, we have met before. ;) I am afraid not much other than cope since no treatment is available so far...
I do agree that Sjögren is systemic, it is known to cause extreme fatigue too.
I think also a close follow up might be helpful? I hope the plaquenil helps for you!!
(Warning Dutch!!
https://www.cibliga.be/wat-zijn-cib/sjogren-syndroom/)

Btw it seems that I also have very dry eyes and (visibly) extremely dry lips. I think that too and the fact that it was in many reports
Which eyedrops do you use? While having the problem for +10 years i only went to the opthomatologist 3 times for it because it impaired my vision (while otherwise my eyes look waterish and with swollen arteries so reddish and I take this for granted ) no drops ever helped me (even though some today cost almost 20 euros :-S) apart from a steroïd mixture but I would like to avoid that.


For my case: (which is quiet parallel to @Gingergrrl it seems!)
Finally I made some work letting my speckled ANA bodies retest in august: they came out positive again. Some other parameters too, haven't seen the lab myself. I did found some other labs however with more crazy worths of parameters that where going to the roof and next time behaving composed.
My GP at home was like okay you can book an appointment in september/october you may be seen.
Unfortunately I got more complaints: high night fevers, the very "typical" (in my case!!) pain in my upper back: "lung membrane pain" (pleuritis?) and diaphragma pain (if that even exists!) also having difficulties breathing. So I went to another GP as I am somewhere else now, he called a rheumatologist who could see me the next day and asked straight: my patient is a lupus suspect, ill for +15 years, now the puzzle may come togheter bcs of blood lab (he had the new blood lab and put it into the enveloppe together with a pneumologist test, I just had made an appointment there: as with every doctor I go I am borderline case though showed big improvement with this "astma pump" (but I am afraid for anticholinergic medicine: need to look up if this pump has it :-/ ).
She was very sceptical at first and gave me a hard time convincing her. Happily the weahter has been bad for 3-4 days (stormy, humid, rainy, thunderstorm) which gave me a lot of muscle and joint pain otherwise I wouldn't have even bothered trying because I wouldn't be convinced myself (and I did not even was yet while I thought to have SLE like 10 years ago: reading the symptoms they all fitted...) But since I moved a lot, my GP's often changed so no-one knows the real picture and also different specialties don't always have the habit of making a report, causing the information to get lost and of course once you have had sth and a specialist or GP's tells you what to do (or that there is nothing you can do except wait): you don't go back...

Happily I had all my blood labs printed out (from the time that I was looking like a real hypochondriac bcs I was convinced sth was wrong and they were overseeing it - but never ever used the word lupus not to be hold completely insane!) and also reports of CT and MRI scans and some good reporting of our university hospital.
(Which I saw now asked years ago to follow up my auto-immunity and inflammatory parameters every 4 months: but this never happened... though I realise now the professor told me the "prophetical words": we do not find anything that can explain your symptoms. Bùt, that we don't find anything now, doesn't mean we won't do so in the future..." ). Me gotting too tired and well being used to a body acting completely crazy - I never went back ...
Anyway the rheumatologist was very very strict and she wanted to have me proven anything, even lung and kidney infections, vasculitis, pleuritis, all my C3 and C4 complements (never thought that meant anything but apparently it does), all the times my blood was indicating an other (shocking) illness and a couple months later. I felt like standing for a judge. The ANA on itself she didn't find enough evidence, so she ordered other testing.
But the fact that I had ulcers in my mouth (painless or painful), swollen glands all over my body and fevers was convincing... I was already over the shock because another specialist I consulted with told me straight: you realise you have lupus right (after handing him the same file and telling my story) - I had made an appointment there because he is seen as one of the top CFSME doctors in the country (and also lupus) together with dr De Meirleir (it is doctor F.C.).
So I went back with a 6 month dose of plaquenil.
I regret have not discussed the possibility of going back to work with her. Afterwards I realised she talked me out of sleeping untill noon (which I do know) but suggested to nap instead during the day - but this makes me for one or the other reason very depressed when waking up all of the sudden(!!!) and also losing every appetite when I wake up, and last years my body just can't sleep during day. I thought later this tip was by no means indicating that I could go to work and since she prescribed 6 months...

Okay so far the SLE story. I think the first signs were at age 15-16, everything is congruent and makes sense. Though I have always had much help from the CFSME patients and i still think we experience much of the same symptoms and contribute useful to each other.

Now there are for me two immediate great problems which are for me very frightening:

1) the "breathing problem" which has been mentioned here before: feeling that no air is getting in, I have to move and cringle around, and all the sudden it feels like my diaphragm goes down (or up: who knows? :-S) in a reflex (by this time I have made already 50 attempts to elicit this reflex and made all kind of weird yawn faces accompanied by it and tried many shoulder and neck positions so no-one may ever see me doing this struggle and one of my biggest fears is getting it in public: that would definitely gather attention!!! - then my diaphragm acts like a pump and my lungs can fill theirselves completely untill the bottom.
Only then my body calms and feels like being satisfied with enough oxygen and stops strugglin for air...
My fear is of course what if I don't succeed in eliciting this reflex (obviously it always worked untill now and it always comes)
Btw in a cardiologist report (yes i have done some shopping lately it seems but it is been over 10 yrs that I saw one while i have a light form of tricuspidalis insufficiency and i realised it got about time to "do my homework: call the specialists, make appointments and go to them as long as I still am quiet energetic because my muscle weakness stopped after baxters said to be a vitamin mixture and vit B complex (and I also injected myself with vit B12- creating an overdose according to doctors but anyway) is stated that "the vena cava inferior goes flat". My translation: vena cava inferior collapses... Does that have to do with my breathing problem?...
And maybe even more with my arhytmia problem and also I often have the feeling of a (clear) hypertensive BP in my head / neck / chest region with arteries almost flying out of my body...

Nothing was mentioned about this vena cafa inferior collapsing orally and i was officially declared fine wo follow up.

2) As I posted somewhere else, I suffer from shockingly great cognitive decline... Very ironic because finally after +10 years I manage to stand on my legs properly and gather around. Only I have no orientation, I lose track in conversations, I forgot what i want to say, i mix up words, i don't find my words, sth pops in my head and i completely forgot what the other person said and i can not retrieve it by any means, i am trying to reason in my head: nothing, but nothing (!!) happens!!!
As someone scoring very high on IQ tests, assisting people with dissertations and phds, being acknowledged by almost everyone in my environment as highly intelligent and the first go to source in case of problems regarding knowledge, research, looking sth up, ... this is a huge problem ...
Yesterday I noticed I even forgot the name of my own insurance company and had no idea bout the name of the product. Not so important may you think, but my passwords? Can't tell you ... I used to have brainfogs coming and going with these extreme moments of getting lost in a little room and extreme disorientation which we all know. But this is different...
Since I studied 2 masters i am supposed to have a lot of knowledge also. It still is there somewhere, but I obviously am not able to make connection with it anymore and I can not retrieve it ...
Having a conversation is very hard and even typing this posts which would be sth I had done in 10 minutes normally - making it much more coherent, without mistakes and repeating.... - i had to stop multiple times to look for my words ... and even wondering what I was going to say... This is sth that never ever happened to me before.
I am very very scared.
It means that different parts of my memory are harmed and also my reasoning is extremely affected!! A working memory: I don't have it anymore!! :-S I am taking ginkgo, COQ10, seleniomethionine but it doesn't clarify....

I guess this is a consequence of anticholinergic use doctors did not warn me for and different pills were given to me, all with anticholinergic effects. Upon mentioning the proplem (first time after months of use) i have
What must I do? ... I even feel that the decline is only worsening and maybe that it is even going faster than before. That while I stopped with the anticholinerga so what can I do now? I am 33 years of age... It must be 1.5 year ago that I first really noticed my very wide vocabulary was not available anymore...

I feel like i have done a trade off: losing my brain and regaining muscle strenght, or the opposite. This was not a trade off i wnated to make bcs I could live with laying and not doing much bcs i always had my brain that was busy thinking and keeping me alive and alert, reasoning about all kinds of (world) problems. Now there is just ... emptiness: nothing happens within. It is silent ...
If anyone knows this or knows what could help, please tell me. I would be so grateful.


(Btw even though I know have complained to almost 4 different doctors of it: no diagnostical tests, nor a therapy except for the ginkgo was ever talked about while i keep losing abilities fast and I am only 33... :-S
Btw 2: given the extensiveness of my complaints that know seemed to have been lupus flares and are all quiet typical, while even the screwed blood values, fevers and rashes and visible infections accompanied them as like renal problems (protein or blood in urine and cysts in kidneys according to a scan: which also never so referred me to a neprhologist for it and I have never find the force nor courage to go there myself) it is quiet strange to me that I had to wait untill 33 (let's say 28 - 30 because I did stop my medical research around this age so it was never tested anymore) untill scoring positive on the auto immune body tests and 1:180 is not impressingly high but merely just the border. :-/ Does that mean that in terms of prognosis I don't have to fear? I read that since diagnostic tests are getting better and are more widely used, a lot of "light cases" with lupus, sjogren etc are detected nowadays. (Light means in this case that your organs don't start to fail if I understand well requiring a transplant or long hospital stays ;) ).
But I have high hopes... only my cognitive function needs to improve. Even if it stays like this, I don't know how to have conversations with even my own friends anymore. :-S :-S
 
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Belgiangirl

Senior Member
Messages
108
Can anyone help me interpret this ANA tests? I got the ANA test EIA with reflex cascade in April and it came back positive, but I tested negative for the specific antibodies of the main autoimmune diseases (cascades 1, 2 and 3). On June 4, I tested positive in the RFX titer pattern IFA with 1:640 titer and homogeneous pattern. On June 10 and again June 18, I tested negative on the ANA EIA with RFX cascade test and I am puzzled how I can have very different results in a short period when my titers were so high. I am wondering if anyone has experienced such a quick disappearance of ANA antibodies? I am also wondering if having a positive result in the ANA would be an exclusionary test for CFS/ME? Also, any views on which other autoimmune antibodies tests I could try to ask my doctor to order beyond the rheumatoid arthritis, lupus, sjogren, scleroderma, mixed connective tissue and parietal anti-bodies, which I tested negative? Many thanks!

Anti-phospholipids maybe?

To be honest seeing the difference in what doctors are ordering for tests is completely stunning. It implies some diseases or problems can be easily overlooked.
This shouldn't be the case. But it is . I don't understand why it is not protocolled more. Also a Gp should make the patient very clear that p.e. a rheumatologist will order this, an endocrinologist this etc.
In my case it was an endocrinologist who tested for my ANA's. They came back positive but he never even noticed or did not mention......

My antiparietal cells were also positive (1:40) but were tested like 2 years ago by a rheumatologist - also never mentioned - only recently i am starting to experience some bowel discomfort. No doctor gave it 2 minutes of attention at any moment in time. Also my anti-phospholipids were slightly positive though the test is difficult to interpret (< 12 is okay it says so normal people do have it slightly?).
Antiparietale tests were never redone...
Most of tests I hear people speak about here, I never even heart of while I have had a lot of sts extensive blood labs being drawn by general medicine, rheumatology, endocrinology and even hematology in the past 15 years.

So you see how randomly medicine might be and it is sometimes just a coïncidence and having good luck with your cards and doctor.


More shocking is the difference in treatment people get.
 

Belgiangirl

Senior Member
Messages
108
Thank you very much that is very interesting!!
Well I ordered hoperzine and fosfatidilsyrene... this whole minerals/vitamin and cognitive thing is sth I have to work out on my own since it doesn't yield much interest in doctors. Unfortunatelly I am still waiting for them to be delivered making me fear the damage is more and more permanently the longer it takes to counteract the effects of anticholinergics and antiphospholipids maybe?

By now I am on plaquenil too since my ANa was positive at 180 and speckled.
CRP has all my life been very high in me so I am very shocked for you guys this seems to be a reason to base treatment on? I have a history of lung and kidney infections, pleuritis, vasculitis, strange rashes (skin is a nightmare), side effects from pills beyond imagination, recurrent infections especially are the problems, low immunesystem, ... observable (has always been the case): white matter lesion, swollen glands almost everywhere, feverish (measurable), nystagmus, yellow in the side of my eyes, very low BMI, ulcers in mouth, small cysts in kidneys and traces of from what i can google is kidney damage in my urine troughout my life and also liver damage in my blood (hyperbiliburemia) and something else (unfortunately i need to look everything up because my brain is still not working...), a valve of my heart which works insufficient in the lowest grade, heart arhytmias, bradycardy, tachycardie, hemochromatosis / the oposit / low and high values of everything and then they disappear (C3, C4, leukopenia, trombocytopenia, too few RBC's which are too large and have the wrong forms (poikocytosis?), butterfly rash appears in the evenings the last years: didn't even realise it...
The explanation always was: when we screen every person, they always will have some abnormalities...
My main symptom stayed fatigue and muscle weakness. Many other things come and go (like diziness attacks making it impossible to stand upright let alone to walk) but I didn't even bothered mentioning them anymore unless they stayed for months or years.
Problem with CRP? Doctors never mentioned it and said it was a coincidence and even a small virus or little infection somewhere could mean an elevation so it had no diagnostic value, so it astonishes me that they would base treatment on that?
Tough I did come down with endometriosis and after removal of the lesions and cysts it went more stable.
Other side: this CRP is not heaven. I had once blatter infection with my urine being more pus than something else: no CRP rise, same with pleuritis.

So my kidneys, nor liver, not anything else has ever been "cleart". Actually i didn't know about anything cause i wasn't told about it, but some years ago while i thought i should find it i asked my medical files and got my hands on blood labs and scans which made me wonder??????
By the time I am showing symptoms - and i am showing them already (jaundicing eyes and sometimes serum also is yellow and it came also back as another colour lately but I don't even remember)

The reumatologist didn't think ANA 180 was convincing at first glance - but when she saw some scans, doctors descriptions and blood labs troughout the years she concluded that plaquenil could help.

Always had been having diaphragm pains and dyspnoe. I konw the diaphragm is related to pneumonia or pleuritis in my case. But recently Rx showed sth called "emfysematic chest: flattened diaphragm dooms and bigger space posterioanterior... making me freak out that there is still more to solve and I might have emphysema without ever having smoked a cigarette?? The pneumologist didn't mention anything of it, just that he wanted to see me again in 6 months to see if the medication had any effect: I felt like he looked at me like: please you don't have anything serious and I give you the medicine but I don't expect we should make this cost for you (of salbutamol) because it is more imaginary than anything else... On the other hand the nurse made immediately clear my tests were aberrant.
now (but i am in a bad dusty environment here cause of a large construction site, but in Belgium you are always in a high polluted area cus where i permanently live is close to a very busy motorway...)

GP were i temporary live says i need someone who coordinates my case and one pharmacist who has an overview of what I take etc. The best effort so far in finally getting some health care...
All of this sounds so much like a hypochondriac i am very aware, and typing this its agitating me because it feels like my body is devastated - but it is true

Now I have a yellow spot in my eye, which was burning and hurting extremely: no-one can tell what it is ...

Must say the plaquenil made some changes I can see so far:
- less fatigue, but my fatigue already improved a lot since vitamin baxters - even though no apparent shortage
- vit B injections: muscle weakness is partially gone
- stifness of joints is still there but the pain is clearly less, though i will only be able to judge that well when the weather becomes humid
- must say I have more trouble sleeping - I slept very well before (which has not at all always been the case - so I still suspect me to have - at least had - CFS/ME)
I hope for the plaquenil to make everything more stable and not to have alerting or scarying blood values or symptoms anymore (like 2 times in my live i went to hospital for suspected trombosis. But with two false negatives one thinks: whatever I feel, it obviously doens't make any sense - so I whatever warning signal I just stay in my bed and will cope with it. But having SLE, puts things in other perspective. I would like for doctors to tell me are there any risks short term which I should be suspicious for? (But I think they will reason that I'll find my way).
Okay well now I sum up I realise the plaquenil didn't do much for me yet...

I must say I stopped because my eye experience and thinking it could be due to plaquenil.
After restarting: my fever never went away again and I do still have it.

Also must say that one hand I feel i will be taken more seriously, other hand I am fearful that there will be still scepticism. The reumatologist I saw now, wanted me to track, registrate and prove everything like skin rashes, temperature, scans, ... because she would only take visible things into account, but i must say

What I just want and hope from health care for me, is not per se getting the best treatment straight away, but if it indeed is lupus, I would like to now what damage has been done, and how to prevent further damage so that I can sustain life quality. Or even improve it. And what should I do / how to live to make sure I don't do any further harm?
So instead of what it seems to be now like oh your skin is not yellow, your blood indeed is abnormal but nothing trough the roof, i don't want to be there when they are trough the roof and then we will admit you and do workup and take your case serious and look for solutions, but I want to prevent me ever being on that stage...

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.

Though on the other hand i read lupus is mild in caucasians and not devastating like you organs go into failure and anything. On the other hand I feel like i am in the first part of my 30ies, my blood clearlly show abnormalities in terms of organ functioning, I would like a doctor to have a closer look so at least I know where I am at now to see after 2-5 years how things changed.

But untill now I feel my GP here takes this serious, but I am afraid of the care at home in the place where I really live because there is no universitary hospital close and I doubt if they have much experience with lupus patients - or even not make a fool out of me.

When it comes to cognition, I also wonder does this ANA cross the blood brain barrier and is it possible that the lupus did affect my neurological state? If so, why a lumbal punction was never been done?
Unlike most of you, I don't dare to ask for tests or treatments. Being taken seriously if you are very slim and not good looking is already hard enough and I feel you insult their knowledge and expertise upon doing so. Recently i asked a tilt table test to establish my pots to my gp but he reacted negatively that this test was inhumane. For me I feel like everything which is documented, will help my case.
When not documented, it doesn't exist in medicine and is a make-up story of a sick hypochondriac and all you get is yawning or another insult. For me this POTS i can live with it, but the trouble is I can't tolerate standing upright for long or doing walks in summer because my legs become so heavy and painful, actually making me immobile troughout the summer cause it really is unbearable.
(I didn't even mention the dyspnoe when I start to have a walk, which I always thought and was told to be a consequence of the fatigue, and not the other way around...).

I just want to start my life (and hopefully not end it). I at least want to have one before I die because I never did really live since I was 15-16 which lots of us will recognise....)
I can forget all this and distract myself but when writing about it I feel a panic taking over... especially when I read here people get more complete treatments / checkups / follow up care and realising where I live there is not really a great health care system installed and things are easily overlooked. And it is all so fatigueing to go trough all that (and stressing), when my condition gets bad (i must say in terms of fatigue that apart from the fact that i am devestated now because the stress kept me awake it is better, but how long will it stay that way?) I won't have the energy to go trough appointments and everything anymore, I just would stay in my bed because caring for food, washing and everything already is enough...


Btw still unclear to me if "my doctors" "believe" in the lupus but judging from a diagnostic scheme I found I should have got the diagnosis years ago since all my screwed blood work (but would be too small differences so was thought to be of little or no clinical significance - something I understand of course but what when the patients experienced symptoms all this time? :-/ I thought that changed things, at least if you don't think this patient is letting his phantasy go into your consultancy room? ) and scan results. But it seemed that a positive ANA (first i thought this was not positive) changes everything?
 
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Belgiangirl

Senior Member
Messages
108
@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.

I think here the goal is to avoid flares, put it even more harsh: avoid organ failure.
Cause I thought or always heart once elevated, always elevated, so no-one would bother about it here.

But as I interpret it like you state it in your country they judge an antibody (I also had them already for anti parietal and antiphospholipid though there were few so for the latter having some might be between normal ranges) positive titer as to be an active disease that might still do harm and should be neutralised.
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!).

Here I think they see a titer >180 as a flare up and a titer of 180 as prove of an existence of a disease of wich heavily flare ups should be avoided.