Daughter is testing for SLE :'(: I finally convince... - LUPUS UK

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Daughter is testing for SLE :'(

Lara4228
Lara4228

I finally convince my 19 yr old to get tested for lupus

Initial blood work comes back...

High esr...41

Positive ana...speckled pattern...

All other counts normal, her baso and eso is Borderline low.

And now she is being sent for more blood work.

Wish us luck!

59 Replies
oldestnewest

Yes Lara I do wish you luck.

I have Lupus and daughter at age 21 was diagnosed . She is managing well and is able to stay relatively well on prednisolone only, as she has had 2 babies since her dx.

Hugs 🤗

PM

🐚

Thank you.

You know that instinctive gut feelings we get?

I've been telling her for almost 3 yrs to get checked. I know she has it. I also know (and I hope I'm very wrong) that she will suffer the most out of our family with it.

Time will tell and I'm grateful, if she has it, she knows now :)

Yes I agree....and if she is managed early on she has a much better chance of the disease being controlled

Hugs 🤗

PM

🐚

I hope u meant plaquenil. In my opinion prednisone is not good- only to be used when absolutely necessary and for short periods of time.

Lara4228
Lara4228 in reply to sraines

That is interesting. I have many of my symptoms alleviated when i was on Prednisone and I am going back today to if I can get back on it. I did not know it was only a short term solution?

vaderviper
vaderviper in reply to Lara4228

See my reply below.............many lupus patients are on low dose prednisone (preferably 5mg) for most of their life. There is always the potential for side effects, but at that dose it is usually minimal.

Dr. S. (in the USA)

sraines
sraines in reply to vaderviper

I'm sure it may be ok for some, but it contributed to destroying my step fathers immune system and he died of ARDS at 52. My Dr. tells me only to take it when absolutely necessary. It scares me as we all have flawed immune systems and I think it's too risky for daily use at any dose for an extended amount of time. Maybe I'm wrong. I know it would certainly make me feel better right now, but I won't take it unless I'm in the hospital very sick and they insist. I also have CIDP- had GBS a little over a year ago. Paralysis was only waist down and temporary. I receive IVIG every 4 weeks.

Oh I just replied to sraines and didn't look 👀...yes I guess we all react differently and I know prednisolone is not tolerate by many....it was the wonder drug for decades and I'm reassured that a dose under 7.5 mg if tolerated and monitored for long term effects such as bone density, can be taken long term

I've been on it for 15 years but mostly at 5 mg. 😳

Keep us posted Lara, about yourself and your daughter. Fingers crossed she is ok

Hugs 🤗

PM

🐚

Just made a new post with my update.

sraines
sraines in reply to Lara4228

It may be ok for you, but it scares me due to the long term effects to the immune system overall. Plaquenil prevents organ damage.

vaderviper
vaderviper in reply to sraines

You are partially right. I won't go into the reason why, but all lupus patients should be on Plaquenil (it has been shown to decrease vasculitis and increase life span). It is necessary for some lupus patients to be maintained on prednisone.........ideally to a daily dose of less than 7.5mg. The vast majority of people can safely take 5mg of prednisone for many years (without getting some of the bad side effects).

Dr. S. (in the USA)

P.S. I know all of the potential side effects of prednisone, however, I too have lupus and for years and I have been on Plaquenil and 5mg daily of prednisone. As you know lupus can attack any organ system of your body, low dose prednisone can help prevent that.

Buffy14
Buffy14 in reply to vaderviper

I had an acoustic neuroma in 2008 6 years after my SLE diagnosis and the surgeon who is now a professor of medicine in London told me plaquenil could have caused this . Also a lady on the hughs syndrome community who is on plaquenil has just been diagnosed with an acoustic neuroma, the is under the post a serious cautionary tale all about serious side effects to plaquenil.

vaderviper
vaderviper in reply to Buffy14

First, let me explain you are now talking about my medical expertise.......I have seen patients with just about any neurological disease you can name. I have been a Neuro-Ophthalmologist for over 30 years and chief of that Dept. in my hospital for over 23 years (after finishing Medical School and receiving a Ph.D in Neurophysiology I then spent 6 years doing a residency in Neuro-Ophthalmology. I have never seen a case of acoustic neuroma caused by Plaquenil.........so I called the FDA and asked them have any cases been reported........as of Dec. 2016 there have been no reported cases. I am not sure why your Dr. seems to think Plaquenil is the cause, but I can not find any evidence of that being the case. One of the main concerns of Plaquenil is that it can causes deposits on the retina leading to blindness (very rare....about 1%)........this is why everyone on that drug should have their eyes examined by an Ophthalmologist every six months; if you catch the deposits early then you stop the drug with no ramifications. There are other side effects as well, but I am not going to list them all.

Dr. S

P.S. I have been on Plaquenil for over 6 years for Lupus.

P.S.S. You are welcome to contact me any time and I will answer any questions you have in my field of expertise.

Buffy14
Buffy14 in reply to vaderviper

Well I was shocked when the surgeon said that to me and the way he said it shocked me more " the plaquenil could have caused it but there's nothing we could have done about that because if you don't take your lupus medication you could die " . I mentioned what he had said to my Renal consultant and he said he had not heard of it just eye side effects. I therefore didn't know what to think and a couple of days ago as I said someone on the hughs syndrome site who is on plaquenil has just been diagnosed with an acoustic neuroma , must just be coincidence then , what is the cause of an acoustic neuroma usually ? I had not had problems with my ears before SLE , I was diagnosed with SLE in 2002 with a dsdna of 120 and therefore had been on plaquenil 6 years before my acoustic neuroma surgery but told about it 3 years prior to that , they left it to see how it was growing.

Lara4228
Lara4228 in reply to Buffy14

Is acoustic neurma painful? If so, how would the pain be felt?

Buffy14
Buffy14 in reply to Lara4228

No it isn't you get noises in your ear and balance problems, why do you ask ? Vaderviper in his reply says there's no evidence that plaquenil can cause an acoustic neuroma so don't worry, is your daughter or you on plaquenil.

Lara4228
Lara4228 in reply to Buffy14

I ask because I have been having sporadic ear pain, mostly my left but occasionally in my right and sometimes both simultaneously. I have had an ultrasound done, hearing Test, seen an ENT, crap loads of antibiotics and nasal sprays. It's been happening for about 9 months. There is no fore warning and happens in all circumstances (environment), even when I sleep. My dizzy spells have been worse since this started. I have googled everything possible and nothing resembles my symptoms.

That was why I asking :)

Buffy14
Buffy14 in reply to Lara4228

What did ent say about this ? I don't remember having ear infection I may have had some dizziness , what did your ear test and ultrasound show have you got some hearing loss ? I didn't have an ultrasound done . They asked me to march on the spot with my eyes closed , when they said stop and open your eyes I had moved a few feet along the room , I hadnt realised this I thought I was still in the same place , really weird, that's a balance test I think . They also did tests with tuning fork things around my head to see if I was aware of them , I wasn't in some places . Why don't you do a post on here asking if anyone else has had the same thing , I'm not sure if ear problems is a common problem with lupus it can affect any organ .

HiddenThis reply has been deleted
vaderviper
vaderviper in reply to Hidden

The retinal toxicity (1%) usually occurs if you have been on the drug more than 5 years, are older than 60, if you are obese or have liver and/or kidney problems. It can lead to complete destruction of the macula in the form of bull’s-eye maculopathy. If this change is caught early, then the drug is stopped and the majority of times there is no further problems (sometimes there is still a mild progression of the disease.

This is why examination of the retina should occur every 6 months and have a visual fields test and sometimes a fundus autofluorescence and/or multifocal electroretinography.

Dr. S

Buffy14
Buffy14 in reply to vaderviper

Great I was on plaquenil for a lot more than 5 years and I have lupus nephritis , no eye disease just the acoustic neuroma.

sraines
sraines in reply to Buffy14

Really- that's very interesting- and scary! I wish I didn't have to take anything, but when I stop the plaquenil I get worse. What is acoustic neuroma?

Buffy14
Buffy14 in reply to sraines

Thats complicated to explain but it's a tumour somewhere between your inner ear and your brain stem usually benign and it affects your balance. You can Google it to get more info but don't worry I am not convinced about the connection to plaquenil, read what vaderviper has said .

sraines
sraines in reply to vaderviper

Yes that's why my rheumatologist has me on it. Do you take 200 mg and if so is it once or twice a day? My Dr. wants me to do 2, but I'm only currently doing 1. Nervous about my eyes and I read the higher the dose the greater the risk of complications. I know prednisone can be a wonder drug, but I only use it as an absolute last resort. If you read my reply to the original comment I think you will see why. I've been in bed over a week feeling absolutely awful. I'm sure prednisone would have brought me out of it, but I'm that afraid of it. :(

Lara4228
Lara4228 in reply to sraines

My mother was on Prednisone for quite a long time and now her bones are so brittle that if she simply bangs her wrist, it's broken :(

She broke her hip 3 years ago, then her wrist a year ago and her other wrist the same year. But she swore by it.

sraines
sraines in reply to sraines

I'm speaking of prednisone in the above comment on what I take. Just to be clear. Yes I was relieved to read what the Doc had to say.

Daisy1991
Daisy1991 in reply to vaderviper

Hi Vaderviper

I wonder if you could answer a question for me.

I am on hydroxychloroquine and it has relieved all of my symptoms except for some neuro issues. But my question is, on the last 3 occasions I have had a blood test a small clot as developed at the site, also I have notice when I have cut myself it stops extremely quickly and doesn't run as such, a bit hard to explain, sorry. Could this be a presentation of sticky blood???? Thank you

vaderviper
vaderviper in reply to Daisy1991

Hi Daisy,

I assume you meant "sticky" blood......the simple answer is NO. I doubt if what you see is a 'blood clot'......it is more likely a small hematoma (a little blood has leaked from where the vein has been punctured and a little blood has leaked into the tissues around the puncture site). Many people will get this when having blood drawn - it often depends on how good the phlebotomist is that is drawing blood.

You say that hydroxychloroquine has relieved all of your symptoms except for some neuro issues; it is meant to relieve those issues as well, but if it does not then a Neurologist should determine if those issues are related to your lupus. He/she will do a number of tests to determine if they are lupus related:

1) X-rays

2) Brain scans (magnetic resonance imaging (MRI) and computed tomography (CT)

3) Electroencephalograms (to capture the electrical pattern of brain activity)

4) Spinal tap (to examine fluid in the spinal column)

If it is determined that your CNS symptoms are due to lupus, they can often be treated by adding non steroidal drugs (if your kidneys are good) or small doses of prednisone (try to go no higher than 5mg/day over long periods of time.

The symptoms of CNS lupus are :

headaches

confusion

fatigue

depression

difficulty concentrating

vision problems

mood swings...........to name a few. (there are others)

Hope I have answered your question. If I can ever be of help, don't hesitate to email.

Dr. S.

P.S. There is a specific test to see if you are more likely to develop blood clots due to your having lupus.........it is called "Anti-phospholipid antibodies".............approximately 50% of people with theses antibodies will get blood clots over time. (if you are positive for this test many Drs. in the USA will put you on an anti clotting drug such as warfarin, eliquis or pradaxa.......at the very least a couple of baby aspirins at night. (the reason it is taken at night is because aspirin has been found to be more effective when taken at night).

P.S.S. I also have CNS lupus (have all 3 types - SLE, DISCOID and CNS lupus))........I developed severe headaches and confusion. It was confirmed my issues were due to CNS lupus and that is 1 reason why I also take 5mg of prednisone daily along with hydroxychloroquine (BID) and cellcept (BID).

My expertise is in Neuro-Ophthalmology, but when any physician develops a disease it doesn't take him/her long to read and study and become somewhat of a very informed patient.

Daisy1991
Daisy1991 in reply to vaderviper

Thank you for your reply that is very reassuring. I was a little concerned.

My neuro symptoms are, lack of concentration, forgetfulness, I get electric shocks, like being prodded with a electric prob, not really painful, just sharp. I have had some tingling in various places and burning sensation in my toes, I have headaches aswell.

They are all intermittent, except for the memory things they stay with me. I can have them for weeks on end and then they subside for quite a while then reappear. I am still undiagnosed at the moment. Due to my symptoms plus postive ANA my rhumy put me on hydroxychloroquine to see if it helped, I am so glad he did, it has given me my life back!!!!

vaderviper
vaderviper in reply to Daisy1991

A positive ANA does not necessarily indicate lupus......a number of other blood tests are indicated to confirm a diagnosis of lupus. If however, you are doing much better on hydroxychloroquine then I assume your Dr. is happy with the results as much as you are. All lupus patients are put on this drug for many reasons, two of the most important is because it has been shown to help prevent vasculitis and also to increase one's lifespan.

I hope you were informed that you MUST have your eyes examined every 6 months (your retina and at a minimum a visual fields test performed). About 1%+or- of people on this med can go blind as it can cause retinal toxicity leading to what we call a 'bulls eye maculopathy'......if caught early the drug is stopped and usually there is no further progression of the disorder.

Daisy1991
Daisy1991 in reply to vaderviper

Thank you for the information, yes I had my eyes tested prior to going on it and have been told to have reqular tests, in the UK the recommended yearly.

Hi sraines

She didn't tolerate plaquenil and she was also prescribed 5mg prednisolone after tapering from the initial load. As it happened she had the prednisolone increased in order to conceive and remained on a low dose . She was living in LA at the time and now back home, the regime continues.

I understand your concern, but she is being monitored and needs the low dose .She will be given a DMARD once she is confident her family is complete.

I probably shouldn't have suggested a treatment...sorry....Lara's post read as a familiar 💡moment and I wrote without thinking clearly 😌😌😌😌😌😌

Sincerely 🙋🏼

PM

🌻

Oh no it's fine. I just get scared about prednisone. My step dad had a terrible cancer- part in thymus gland. The thoracic surgeon miraculously removed it all. My step dad was told never to take prednisone again, as his immune system couldn't handle it. He had always been prescribed it for terrible sinus related headaches. Anyway, when the thoracic surgeon found out he was taking them again and that his regular Dr. was actually prescribing them he was very angry. After he was fully recovered from the cancer he developed bronchitis. He developed sepsis and then ARDS Adult Respiratory Distress Syndrome. It's very rare. He was gone in a little over a week- 52 yrs old. It was awful. That same Dr. who was giving him prednisone is now in prison for overprescribing other meds- not related to this, but you just never know. Some doctors even don't realize how detrimental prednisone can be to those with flawed immune systems. I was just worried. My Dr. told me to only take them if I absolutely had to. Hope all is well. :)

Buffy14
Buffy14 in reply to sraines

What is the difference between Prednisone and prednisolone?

Good luck.

Hello Lara...am so glad your daughter is in the diagnostic process...and I hope it goes smoothly as poss for her...I think it's wonderful you're lupus-savvy, so in a way you're going through this side by side. As you know my lupus was diagnosed when I was an infant...I somehow survived with only emergency treatments + secondaries diagnosed & treated until my 50s...I hope your daughter's version of immune dysfunction & connective tissue disorder proves to be cooperative...and I hope you'll let us know how she gets on

🍀🍀🍀🍀 coco

Lara4228
Lara4228 in reply to Barnclown

Thank you Coco :)

Always such a warm reception with you, it is nice :)

Two reasons I am feeling certain about her, when she was 7 she had blood work done and showed zero WBC count and secondly, I know she is not well, she goes a very pale white skin colour (she is half southern Italian and has the olive skin colour). She has been pale white for quite some time now. When she gets sick, like me and my mom, it takes her weeks and into months to fully get better.

Time will tell and luckily time we have :)

Coco, out of curiosity, how did they know you have lupus at such a young age? What made them discover this? What prompted them to run tests?

Lara

Barnclown
Barnclown in reply to Lara4228

I like the way you're thinking...this makes sense to me 👍

My infant onset lupus story started in the states where I mainly lived until 21. I was exposed daily in utero for many months to the notorious endocrine disrupting artificial oestrogen DES (diethylstilboestrol) in the mistaken belief DES prevented miscarriages. during my first year, I came out in terrible rashes all over my trunk, face, arms. Doctors told my poor mother I had infant onset lupus. For whatever reason, she decided not to admit this to anyone. She kept the secret throughout my childhood & teen flares & treatments. Like your daughter, my multisystem symptoms were obvious. But this was the '50s-'70s and relatively mild cases of non-organ threatening lupus got by, I guess.

I began to live in the uk at 21 so the NHS took me on as unaware of the lupus underlying my multiple chronic health issues & emergencies as I was. Widespread cumulative debilitation progressed because secondary conditions were diagnosed & treated, but not the underlying immune dysfunction & connective tissue disorder (I also have vascular ehlers danlos, early onset Sjogrens + hypogammaglobulinaemia & lymphopenia).

Finally symptoms in my hands & feet became so unmistakable that in 2011 I was referred to lupus & vasculitis clinic where a brilliant prof rheumatologist figured me out. By then I was 58, mainly housebound, barely ambulant and mostly asleep 🙃. At that point my 89 year old mother announced: but dear, you've always had lupus! I'd never even heard of lupus, let alone that I'd been diagnosed with it. Well, I'm glad she was alive to confess...of course my medics love this tale 😉

Enough said

🍀😘🍀😘

Lara4228
Lara4228 in reply to Barnclown

Oh my! You have lived through hell and back! I applaud you!

Talking about lymphopenia... something I failed to mention before. I was reading over my blood work yesterday and noticed that the lab notes state lymphopenia and thrombocytopenia. Would it be normal for the dr not to mention these things to me?

All I remember the doc saying to me almost a year ago when those blood tests were done was...take all infections very seriously.

???

Also, back to me appt today, Coco, if you were me, would you hold off on getting back on the Prednisone before a diagnosis for all my symptoms? Now, keep in mind, I know have new hair growth (which wasn't supposed to happen) and i do believe it has happened because the pred dampened my flare.

???

Barnclown
Barnclown in reply to Lara4228

Am just one of many, as we know all too well here 😉

Lymphopenia is a typically "funny" thing...most medics say that being slightly below normal range may simply be "your normal" & nothing to be concerned about...BUT, if your history is recurring complex persistence pattern infections, then your lymphopenia is significant. And a history of lymphopenia is one of the significant diagnostic criteria for lupus. And in my case chronic lymphopenia + hypogammaglobulineamia (low immunoglobulinsa G, A & M) mean I'm living with a crazy combo of Immunodeficiency + autoimmunity. So maybe your dr is waiting to see whether your lymphocyte results continue to come in low + whether your infection pattern gives cause for concern? I wonder if he is checking your immunoglobulins & complements? This sort of thing is why the diagnostic process can take years....

Good question! Please ask your prednisone question as a forum post cause I've been wondering sort of the same thing about diagnosing my pelvic/abdo gastric stuff while it's being partially damped down by daily low dose prednisolone & daily myco 🤗

🍀😘🍀😘

Lara,

I wish you all the best and good luck. I hope all will go well. Its not easy thing to handle and control your mind.

How is dsDNA showing up?

Lara4228
Lara4228 in reply to Myncare

D's DNA?

I am not familiar with that?

Once ANA is showing as positive for Lupus, commonly dsDNA test will be done to get more details of the condition. Please read this link:

labtestsonline.org/understa...

Each doctors handles in a different way.

Lara4228
Lara4228 in reply to Myncare

Thank you for the link. It is a wonderful wealth of information!

We are getting more blood work done today for further Ana testing.

As for me, ha! I'm at a loss as to what to do. It has been determined I don't have SLE (which I'm very grateful for) but all my symptoms still has not been dealt with. 2 months ago I went in and had blood work done for Lyme's disease, I just found out ye that the lab rejected my Dr's requisition because he didn't fill out the appropriate form. Why didn't he tell me before now? Why did I stumble across this info only because I went in to firmly state that I want to know why I am experiencing all these random symptoms? Anyway... today I go back to see my dermatologist and was hoping to get back onto the Prednisone, as I felt my best when I was on it. But I ask myself, do I want to do that without getting a diagnosis? I mean, I ha e discoid lupus, and yes it alleviates my flare with that but also alleviates many of my other symptoms.

Ugh...testing can suck lol

Myncare
Myncare in reply to Lara4228

I know what you are going through, Drs are humans and fallible with the pressures they are under. Few suggestions on Prednisone - it will be good but manage the side effects and review your diet based on the dose.

Some times luck/fortune will not favour us, you need to be brave and use our hope as biggest weapon to handle the situation.

We all in this forum support you in whatever the way we can. Wish you all the best.

Good luck and Bright Blessings

TTx

May I suggest all the necessary blood tests for Lupus:

1) Anti-phospholipid antibodies: over 50% of patients with this antibody will get blood clots over time.

2) Chromatin antibody: 60% of these patients will develop kidney inflammation (lupus nephritis........urine samples should be done every 3 months).

3) Coombs antibody: this is now considered one of the criteria used to classify someone as having SLE.

4) dsDNA: main criteria used to classify someone as having SLE.

5)Ribosomal P antibody: this antibody is 100% specific for SLE (systemic lupus) - only people with lupus are positive for it.

6) ESR and CRP

7) CBC

8) Is she anaemic.......often times people with lupus will develop anaemia (it can not be treated) as this is called "anaemia of chronic disease".......it can sometimes wax and wane ( get better & worse).

Hope I have helped.

Dr. S. (in the USA)

P.S. A positive ANA can be a false negative for autoimmune disorders.....many people have a positive ANA and no autoimmune problem. A high ESR can indicate an inflammation, nothing more.......could also indicate anaemia.

Buffy14
Buffy14 in reply to vaderviper

Thats interesting about anaemia I went through a stage of iron infusions a few years back , big bags of brown stuff through a drip , would all that have been a waste of time then ?

vaderviper
vaderviper in reply to Buffy14

Your Dr's. must have confirmed that you had 'iron deficiency anaemia'........that is done via blood tests.....hematocrit, hemoglobin and serum ferritin levels.

Anaemia 'of chronic disease' is not well understood.......and can not be treated. Obviously your treatment helped so you must have has iron deficiency anaemia.

Dr. S.

Buffy14
Buffy14 in reply to vaderviper

Oh right , I think my iron levels are ok now , they are checked regularly as I have chronic kidney disease , level 3 lupus nephritis, noone has said I have iron problems for a few years now .

Very interesting vaderviper . Do you know if they do the Ribosomal P antibody test in the uk? I've not heard of that one before.

I do not know for sure, however I would assume that it is done in the UK as this is the only antibody test that is 100% specific for Lupus.

Dr. S.

Lara4228
Lara4228 in reply to Fennella02

Me neither. Canada here

Paul_Howard
Paul_HowardAdministrator in reply to Fennella02

Hi Fennella02,

I have not heard of this test being used in the diagnosis of lupus in the UK. I've done a little research and found that these antibodies are only found in 12-16% of people with lupus (ncbi.nlm.nih.gov/pubmed/157...).

According to this study the test has limited diagnostic value for neuro-psychiatric lupus and is not helpful in differentiating between the different disease phenotypes (ncbi.nlm.nih.gov/pubmed/163...)

Thank you for clarifying that Paul_Howard. I thought that there must be some reason for it not being more widely used (or used at all?) here in the UK. Useful, though, if you do get a positive result.

Many thanks, Clare

Hidden
Hidden

Hi there,

I hope you get a definite diagnosis soon.

In the meantime you can find more information about lupus symptoms and diagnosis here lupusuk.org.uk/wp-content/u...

If your daughter receives a lupus diagnosis, you might find requesting our information pack about the condition of interest lupusuk.org.uk/request-info...

Let us know how you get on.

Lara4228
Lara4228 in reply to Hidden

Thank you Fabienne,

I am fairly familiar with lupus as my mother has SLE and so does my 'second mother' (a very dear family friend).

I have been having a hard time finding someone to actually listen to my symptoms and investigate them. I will be asking my daughter to join this forum shortly, so she too can tap into the information you guys provide :)

Paul_Howard
Paul_HowardAdministrator in reply to Lara4228

Hi Lara4228,

If you need information about any lupus specialists to ask for a referal to, please just let us know what area we are in and we'll tell you about any we know.

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