Even more confused?

[Cushties]

Thank you for replies to an earlier post, very much appreciated 💗 So...been to see rheumatologist who has asked me to repeat ANA and anti DSDNA.

Results first ones were AnA..1/640 homogeneous

Ds Dsdna ab (Elia test) 16(high)

As the anti dsdna test was just positive or low positive he wanted me to repeat...

ANA came back the same and, anti dsdna came back (Elia) 41 (high)

I get all my test results via my hospital login.

However he has told me he had asked them (lab) to test my anti dsdna via crithidia test...and, said this came back negative...I didn't get this test result.

He said its more specific...when I asked him what was the point of the Elia he said different labs use different tests and he diagnoses using crithidia??

So he has said that my earlier diagnosis of psoriatic arthritis from 2013 is correct (even though I have no deformity to my joints after 10 years of only anti inflammatory meds) and because I have had reactions to other dmrds he has started me.on hydrocloxquine (not spelt correctly) which is for lupus and only prescribed off label for psoriatic arthritis?

I left the consultation very confused.

Psoriatic arthritis doesn't normally have a homogeneous ana pattern normally speckled or nucleus and, very rarely antibodies are found (in any test) for dsdna. When I was diagnosed 10 years back these were all weakly positive. Which at the time would make sense for seronegative arthritis such as psoriatic arthritis, but it's just not progressed as expected (a good thing).

I'm also confused as to how a test that is 95% positive (Elia) is not specific and how crithidia test would show a negative if I was positive twice with an Elia test.

My worry is that the Elia phadia test is new..used since Feb this year in my nhs and my consultant is in refusal to recognise it....why would he ask for an alternative?

I am happy about the treatment because if it is lupus this should help but if its not helpful for psoriatic arthritis biologics is my next step and they differ completely ...so, I would want to feel confident in diagnosis really before taking these medicines.

Any opinions and advice would be appreciated..sorry for the long post...thank you all in advance !

[M0wnt]

Hi, so my belief is it is hard to diagnose lulus and if the arthritis hasn’t progressed in ten years then maybe that’s why he is trying hydroxychloroquine. Different medication may work and if they do then they suggest maybe it’s more lupus than arthritis?

My inflammation markers weren’t up apparently when I saw the rheumatologist yet in the last year I have gone from hiking mountains to walking with two crutches. Yet I am on hydroxychloroquine for my lupus rashes and this has no affect on my joints. But apparently rheumatologist said I don’t have arthritis?

Lupus is so hard isn’t it! Is the not being listened too that gets to me!

Mo

[Cushties in reply to M0wnt]

Thank you...me too, but after diagnosis of PsA, ...only 6 years ago I was trekking Icelandic glaciers! My PsA is very much in my tendons, diagnosed via US and pain and stiffness. The problem seems very criteria and check point based in consultation your symptoms or how they effect your life are not acknowledged and because of that your unsure if they are even taken into account. Seems very process driven. I used to have alot of confidence in doctors..the more I educated myself the less confident I feel. However, its also hard to question them as I think they are used to most being quite passive in their care.I work in health and social care ..elderly care and our focus is person centred ...doctors (perhaps not all) in my experience lack this approach...it would be nice to be fully informed.

Eg. I was told I have wear and tear in my back after MRI scan .I requested the scan results. It shows I have 3 bulging discs 1 already of stenosis and degenerative signs consistent with osteoarthritis...so to me this is a big difference to wear and tear and answers alot in regards to pain in back. Yet rheumatologist days wear and tear...why play ot down...I should know this to protect my back and just because its my back!

I thought the same as you in relation to the hydroxychloroquine....I really hope it works as I do not want biologics...I hope you find an answer to your joint pain

Best wishes

[roby1988 in reply to Cushties]

Hi Cushties! Apologies, busy week before Christmas. Yes, I completely understand you worries bc I am in limbo as well. I had a long chat with my colleague yesterday. He has a general understanding of this methods but he is not sure which one would be the best for AI diagnostics. He did though said there is a person that might know however he will be able to speak with him after New Year. It would be valuable insight for both of us. That would be the only question to my rheumatologist cause past time I was in such a distress, crying (not proud on myself) when I came and asked him to repeat the results. Which he did cause also he knows I work in the lab thus I am quite biased when it comes to specificity and sensitivity in certain methods. But it did not occur to me to ask in this case since I do not work on proteins. I should have. I am one of those people where questions come to my mind only when I leave the office. You work in a H&S care, you have seen situations and illness probably rest of us never will. Try to explain that to him so he can understand where your worries come from. I am to visit him again on 24/1. The last time doc said to me: "you may have, you may not. Make peace with the fact you are on a best possible medication there is for lupus (HCQ same as you)". And it true however it mat difficult to accept it, he is right. I fell safe in his hands its just the worry was eating me from the inside. Also, one suggestion my colleague said (my dad has bad PS since he is 35 and PsA since past year, he is 61, so I know what you are dealing with very well plus now the new pain): proteins in diff cells express diff, so muscle, skin, muscle and blood are completely diff tissues. You can ask about skin biopsy. Since both you and I have skin manifestation. Thos kinda autoimmune changes can be seen in skin. Also my colleague said: it's your health we are talking about. ASK! I told him: you are a bit rough, I cannot be like that haha. So def ask next time all the QS you have and make a diary of symptoms, would be good each day. That is what I am doing. And I will keep you updated <3

[Cushties in reply to roby1988]

Hi there.. yes busy time of year!..no worries and thank you kindly for sharing your investigations.You mention skin muscle etc.. I had biopsy done on scalp (this is the only skin lesions i have ) back 2013 when I was first diagnosed. It was PS. You can have PS without ever getting PS. Obviously, at the time my bloods were not conclusive for anything else and my symptoms were for PsA were apparent hence the diagnosis. However, you can, and are more prone to more autoimmune illness once diagnosed with one.

Fast forward 10 years...my flares continue progressing to more joints..mainly effecting my tendons...and without any DMRD med only anti inflammatory meds when I need them my PsA has caused no damage to my joints (a progressive disease that causes damage to joints if not treated or managed early). It is extremely painful..I wake up stiff every morning and someday struggle to do much of anything...energy is mostly zero and sleep is not helpful.

Also, now my DSDNA antibodies have come back positive twice with Elia test and ANA 1/650 titre homogeneous.

PsA is never homogeneous (from my research and most other connective tissue diseases comeback in low levels of DSDNA I.e less than positive that's if there are DSDnA antibodies as this is as you nlknow an antibody specific to SLE.

The only sign my Rheumatologist has had that I can see, that he has explained is that, the IIF test (crithedia) was in negative range so therefore I don't have Lupus.

Like you...questions come to mind after I leave a doc visit...so typical. I think I will write them down and ask him...I'm not sure if I will be satisfied with his answers however..as, he is sure that IIF test is confirmatory.

I just hope that this hydroxy medication helps...fingers crossed?

Have a lovely Christmas and New year.

I hope you can ask the questions to you doc..you appt before me...mines not till march. Be interesting to see what he says?

Keep well..thanks again 🙂

[roby1988 in reply to Cushties]

Hi Cushties! Yes, I understand your worries: PsA but only on scalp, no joint damage (which normally come one with another, over time). And of course, negative and positive result with two different tests for dsDNA. In my home country IIF is a golden standard (European country). However I never consulted anyone there so cannot say more :(. Let me ask my rheumatologist about all the tests you stated above since I will see him before. I will also ask about skin biopsy, you did yours quite sometime ago, might be worth repeating if you have rash somewhere else on a body? Yes, HCQ helps and should help you with joint pain and stiffness, also rashes if you have them. My muscle pain is much less than 3 months ago when I started taking it. Doc said takes him 3-6 months to work but sometimes women do take Brufen with it. And yes, I am aware AI can come in a package, we have them in my family thus there is an inheritance component in my case. As soon as I know something I will get back to you in the meanwhile I wish you Merry Christmas (I know it might be hard) but really sending you all the positive vibes <3 keep in touch.

[roby1988 in reply to Cushties]

Hi Cushties! Coming back to you-I saw rheumatologist past week. So not much to be said honestly: I asked about IIF, he thought this method was already done on my blood work but then he checked and I have had only ELISA done. On all my blood work since this started about three years ago. So he said it would be a good idea to do IIF. Now I am waiting to see if NHS will accept his request or I will pay private. I asked about methods Elia Phadia (similar to ELISA) and IIF, he said Elisa and those kinda tests are more specific but less sensitive while IIF is more sensitive and less specific. But he didn't comment much on which one he would prefer as a results. I do find his comment "oh I thought we did IIF" telling in sense of...maybe that one should have been done. Also he said IIF is more expensive then ELISA and older standard but not in the way that is now valid but more expensive and has to be done manually to some extent...in any case he left me on HCQ cause it did help with my chronic fatigue, joint pain and dry eye...the only thing is the muscular pain in my upper arms and shoulders that is driving me crazy in pain...at the moment, I am UCTD. I hope you are feeling better taking HCQ and that March comes soon <3 also my colleague at work asked another colleague, so I went to talk to him and not much of inside there either...he talked to me about proteins in general but no useful suggestion on what to do, he said he finds all these methods well balanced. Which doesn't help at all. Keep in touch. Stay well <3

[Suvi8901]

Hi there,

The technology for the diagnosis and testing for various AI diseases is improving all the time but so is the clinical interpretation of the lab results made even harder.

I Googled EliA and it is indeed very new and complicated. There are also as the doc says many labs all over.

Have a read here (Thermo scientific):

abacusdx.com/media/PU_Bookl...

Not easy reading!🧐🥹👆

[Cushties in reply to Suvi8901]

Hi there and thank you kindly for your research! I have looked all over for something such as this and never found zit so I appreciate this.Well, according to this document...the Elia test is, as, I have read, in research documents, more specific and sensitive to DsDNA than IlF testing which is what the crithidia test is . And, the document is to assist diagnosis based on various test outcomes and suggests that the results of my bloods are suggestive of SLE.

The doc was trying to day that it was to do with ssdna and dsdna however I didn't but this as my elia test quite clearly states dsdna?

I'm not very confident however...I would be on the correct medication and it could be that I have both PsA and SLE and the SLE is newer hence the increase and newer symptoms.

The problem I have is ...how do I broach knowledge and opinion to a rheumatologist that wouldn't feel indifferent to his diagnosis was being questioned ...my experience of him so far as he doesn't let me talk very much and doesn't like many questions ?

Thank you again!!

[KayHimm in reply to Suvi8901]

It may help to go to the Mayo Clinic lab site. They explain the various anti DNAs and significance. It sounds like when there is a question of a false positive, a crith test is ordered for confirmation. It is more specific. It could be a more expensive test and NHS does not recommend using it unless there is reason to.

Sometimes rheumatologists can’t be certain of things no matter how many tests they do. You are having very close follow up. So you can be re-tested and monitored. That is important.

Hope that is helpful.

XxK

[roby1988]

Hi Cushties! Finally…I have similar question as you. And I am also dealing with how to ask my rheumatologist which method is better. I will have a look on this tests, as my antibodies were done only with ELISA. I am Biologist but unfor never worked with proteins-antibody interactions. When I ask my colleague he said: both IFF and ELISA are good. But we dont work with diseases directly and not sure if he has a point. I will get back by the End of the day or latest tomorrow.

[roby1988 in reply to roby1988]

*IIF and ELISA

[Cushties in reply to roby1988]

Your inside research would be valuable. The doc/rheumatologist also mentioned to me that my complement levels c3 and c4 levels were normal (my result actually showed that my c4 was slightly raised but he didn't mention this as it obviously wasn't relevant to his diagnosis) . I know complement levels are relevant and can be low in active disease, but not always...just like less than 1% of healthy population having any antibodies for dsdna and only 30-60% of SLE patients having them... positive results show a more active disease in my research. I beleive if i hadnt already been diagnosed with PsA by his department 10 years ago i would of been diagnosed with Lupus today ...as I have PsA symptoms...dispite results of bloods and unless I have protein in my urine etc (kidney involvement) I think my symptoms will always be put down to my prior diagnosis of PsA.

I wonder if your colleague knows about Elia phadia test...that's the test I had , twice noth positive it was the IIF test that was negative in number (I don't know what the result was)...its new and similar to the Elisa but suppose to have a higher avidity ?

[KayHimm]

Cushties -

My first thought is you don’t make it easy with your symptoms not looking like the initial diagnosis and then labs suggestive of lupus. That is the case with so many of us.

I know you said the rheumatologist doesn’t seem to like questions. Well, I think answering questions is part of his job. You definitely need to know what his thoughts are. He could see you as having a foot in each door and covering you with hydoxy is prudent.

I would want to know if he suspects lupus nephritis and what he thinks about the protein in the urine.

My rheumatologist told me once all patients can’t fit neatly into a box. A lot of us are undifferentiated connective tissue disease. You are clearly a concern because he wants to protect your joints but has also been trying to

figure out your positive labs.

I know it isn’t much consolation but right now the most important thing is follow up and treating symptoms. We can change over time.

Make sure report any new symptoms to your GP.

Best of luck.

Xx K

[Cushties in reply to KayHimm]

Thanks for taking the time to reply..appreciated. I think your right re the foot in each door and symptoms...however, he is reluctant to be straight. Maybe he doesn't want me to lack confidence in his uncertainty...I wish they would just be straight and say what they think. I think he is used to more passive patients.

I will be armed with questions and shall question his decisions on my next appointment in March. I don't want him to feel undermined or that I am lacking confidence in him...I just need him to know that I need some control and to be active in my care and fully informed.

GP....most of the time I have to fight to get an appointment with the receptionist and this is a phone appt or email consultation!

I've been registered with them for 8 months after last surgery closed and am yet to have a face to face dispite the requests. Frustrating 😔

Thank you kindly

Best wishes

[KayHimm in reply to Cushties]

Try not to worry about his feeling undermined. This really is par for the course in rheumatology. That is why they are typically the ones to make final diagnoses. They have to be confident about seeing the whole picture and sometimes not being certain.

You might want to ask him what makes him think it isn’t lupus. He may say he can’t be sure but here are the things leaning away from that diagnosis at this moment.

Regardless of the name, you have to let him know how fatigued, in pain and out of breath you are.

Hang in there. Lots of support here.

XxK

[Cushties in reply to KayHimm]

Thank you so much...there is confidence to be had somewhere which is a relief...thanks to you and everyone else for support and opportunity to off load to people that get it and live it x

[Cushties]

Hi all, so had my March appt with Rheumatology. Been on hydroxy for 3 month or so. Helped joint axhes somewhat what. However has not helped tendons...which I now know to be enthesitis...I have this in both elbows, right knee left thumb, heal, mild in my ribs . Rheumatology has said to continue on hydroxy till June to see if it works better by then and has referred me for physio. I also have a tarlov cyst in my spine which maybe causing intermittent sciatica but he is not doing anything about this. I have 'wear and tear or degenerative changes such as 3 bulging discs in various places in my spine...he is not worried about this either.I am worried about it all! He said I shouldn't be and I am 44 and should expect as I get older degenerative problems.

Well I am only 44 and on top of psoriatic arthritis pain I know now I have spine pain that is caused by being 44 and nothing can be done. It does seem right.

His conclusion was because...I wasn't showing active inflammation in my spine at the time of the MRI.

He says ...I do not have lupus....I have a butterfly rash on my face ...he said that it xould be worry....!!!???

I am seeing my doctor tomorrow about my face and for the worsening psoriasis that the hydroxy has caused. And hoping maybe some stringer pain releif.

I hope hydroxy works in next 3 months for me lupus or PSA or both as I am struggling. You font realise how much you use your elbows until you can't!

Hope everyone is doing OK...sorry for off loading ...Best wishes