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Discussion Starter · #1 · (Edited)
Hi there,
I'm currently trying to get my rheumatologist to consider that I might have SLE and not Seronegative Rheumatoid Arthritis, I'll list the reasons why and kindly ask your opinions.

My symptoms over the last ten years, my RA diagnosis was almost five years ago.

Seizures 3 unexplained 8yrs ago
Pallinopsia- triggered by working outdoors all day and going indoors after work. It's lasts hours
Pericarditis 2 times
Petechiae on thighs and stomach chest area
Raynaud's phenomenon
Hair loss that began before being treated with the meds that cause it.
Joint pain usually without any swelling at all.
Trigger finger
Protein consistently in my urine that has never been looked into
Very mild butterfly rash and very small veins under skin on upper cheek and nose bridge
Strange transient flank pain
High blood pressure for almost 2 years not treated yet, just being monitored. Highest it's been is 156/105

This isn't an full list but just what I remembered off the top of my head.

Thanks in advance for any helpful opinions.
 

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Discussion Starter · #2 ·
Oh and both time my ANA was tested it wasn't positive, but I feel seronegative SLE could be considered since I'm supposedly seronegative with the RA and nothing in blood work actually proved Arthritis either even though I have the symptoms and all of either disease since they share many overlap symptoms.
 

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Hi Kate,
Here is a link from the home page of this forum. It tells what doctors look for in diagnosing lupus.
http://www.thelupussite.com/lupus_diagnosis_tests/diagnosing_lupus.html

http://www.thelupussite.com/lupus_diagnosis_tests/have_i_got_lupus.html

Take pictures of your rashes and swollen areas.
Have you had your thyroid checked out? Hair falling out is one of a thyroid that is out of whack.
Have you seen a dermatologist about your rashes? Maybe he could do a biospy , that is how some members have been diagnosed.
Take care,
Lyn
 

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Discussion Starter · #4 ·
Thanks Lyn,

I read through the two links and it would be easier to list what hasn't happened on the list, I've read into this quite a bit before landing on this site.
The only things that haven't happened are the positive results they look for in the blood work and it seems that's the only thing my doctor is interested in.
My thyroid has been checked many times and I've only had one bad one where my thyroid was under active then the next test a month later and so on we're all normal. I've had high white blood cell counts on occasion that were unexplained and also high cholesterol and consistent high blood pressure. Chest pain when I breathe deeply and especially sitting in certain positions. I'm always running a mild fever. I do react to sunlight as well.
 

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Discussion Starter · #5 ·
This is one photo where, I feel it's pretty clear that it's a malar rash. This was after being outdoors all day, on an overcast day. It does this in the sun as well ranging from pretty defined to mild at times.
 

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Hi...... I would be very concerned to be treated..or not, by a Rheumy that believes you have to have positive bloodwork for a diagnosis...when the criteria clearly states this is not the case....it is 4 out of 11 symptoms with or WITHOUT positive bloodwork.

Around 2% are diagnosed without positive bloodwork and I am sure the figures of people with autoimmune disease and no positive bloods runs far higher but they are shrugged off by the medical profession and diagnosed as something else. I remember my daughter training in London at a famous hairdressing salon telling me there was a woman there that had arthritis but she was so tired, so much pain it looked more like my lupus to her...the lady got rediagnosed as psoriatic arthritis (think that's right way to spell it ! )....but years later, having suffered so much, was rediagnosed with SLE......strange that my young 17yr old recognised it immediately having seen me go through the diagnostic wheel and the top London Drs didn't...... and worrying !

I think it is a good idea to see a dermatologist who is well versed in autoimmune diseases....I came across a man recently who impressed me...went with same daughter last year (then 23) for reassessment of her skin as nobody had helped her for nine years......he turned to me immediately and said...how long have you had Lupus ?...............I was absolutely astounded !! And indeed I would consider changing Rheumatologist or at least seeking a second opinion.

I don't know if it is autoimmune or not...but you do seem to have a lot of things going on that haven't been adequately explained....which I think you need and deserve to know.

Let us know how you get on...........Claire
 

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Discussion Starter · #7 ·
Thanks Claire,

My rheumatologist definitely thinks it's an autoimmune disorder and I'm being treated and have been for quite a few years I've been on so many medications, over the course of this. It's also a hereditary thing in my family, my aunt and grandmother both had this as well but even so my grandmother had it the worst, she also had a RA factor that was very transient, it came and went all the time.

Here's a list of the meds I've been on and currently take for the seronegative RA

Sulfasalazine
Plaqenil
Folic Acid
Methotrexate Injection weekly
Enbrel
Leflunomide Avara

I just got taken off the Leflunomide because it was accelerating my hair loss and not providing any benefit after almost 7 months of treatment. That happened last week, when I seen my rheumy last.

I now only take Methotrexate orally, hated giving myself needles and the Folic Acid and am going this week to do a bunch of baseline x-rays and another TB skin test because I'm about to be started on Remicade, I was offered a bunch of choices of things I could try and picked that one because it's only every 8 weeks and it's administered in the hospital which is appealing because I don't have to stick myself with the needles. I'm honestly nervous, always am before starting a new medication.

With thinking I have the Lupus I feel I get ignored by both my GP and Rheumy. My Rheumatologist wouldn't say that it was impossible but wouldn't say I had it for sure, he laughed when I brought it up and said you would then have what we call Rhupus, it's when you have both disorders and he said he's only got 3-4 people he sees that has that, like hey maybe he could consider me since I clearly meet more than 4 of the criteria, but that hasn't happened. I've heard it can take years and years to get to a Lupus diagnosis, which is incredibly saddening. I just want relief and proper treatment.
 

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To be honest Kate..the meds you get for RA are essentially the same as you would get even with a SLE official diagnosis or indeed a connective tissue disease. It is very common to get overlap autoimmune diseases.... I am certainly one of them and therefore earn myself the prestigious title of MCTD with SLE predominating.

You say you suffer with Raynauds too...have you had anti-rnp bloods done ? Could the petechiae be vasculitis ?

It sounds as if your meds need further tweaking which should help settle your body down properly. How does your Rheumy explain the other symptoms ?

Sorry loads of questions !!
 

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Discussion Starter · #9 ·
Thanks Claire,

Yes I've got Raynaud's, and I'm not sure if I've had that blood test, was just told the petechiae was petechiae from my doctor, he basically just looked at it. I also get livedo reticularus often, which I forgot to mention, not sure if that makes a difference.

I'm aware that I'm pretty much on all the same meds that are used with lupus expect I'm off all of those expect the Methotrexate and they're about to add the Remicade to the mix. I'm kind of worried because from what I have read so far, Remicade can actually cause a form of drug induced lupus, which makes me think, well if it's able to do that, could it worsen the symptoms for someone who already has Lupus. I'm just nervous about starting this new one and it's possible side effects. I tend to have sensitivities to many meds out there. I just don't want the side effects to end up being worse than the benefit I might get.

I'll be honest, with all the different cocktails of things I've been on since this all started, I've never been able to say, boy this medicine is really helping and I can totally feel a difference. I've had to rely on narcotic pain medications daily for over 4 years, without them, my life wouldn't be a life, they're the only reason I can get on with my day, everyday. They make most people drowsy, it's opposite for me, they give me the boost in energy I need to work and with daily living. I feel really bad about myself for needing the darn painkillers, because of the stigma related around them and addictions, but they work.
 

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with MCTD and some other connective disease you get Livedo Reticularis... I do.

Don't feel bad about doing what you need to do to function.... obviously you would rather be able to do that without so much help, but so far , it seems that the meds haven't helped you enough. I can understand your nervousness about the new meds...but most of the side effects on all of them make me nervous..but probably not as much as what these diseases can do if left unchecked. Have they tried other meds apart from methotrexate to suppress your immune system ?

You didn't say if you had had your anti-rnp bloods done ? Sorry...another question............take care, Claire
 

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Hi, who monitors your blood pressure? Is it your gp? Can you mention next time they check it about the protein in your urine, and be a bit pushy and get them to get some tests done? Get them to review your meds to check that none of them are intefering or causing any problems.

I agree with Claire, ask the rheumy to run some bloods. Lupus isn't just a positive ANA, you may have other markers such as the complements C3,C4 or anti ds dna or lupus anti coagulant etc. A dermy would run them for you if the rheumy won't so a dermy referral is well worth it. They will help with the hair loss as well.

I wish you all the best, you clearly have much more going on than is being explained to you.
 

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Discussion Starter · #12 ·
I'm pretty sure they ran that blood test years ago, but I can't be positive it was done. Just earlier this year I got my GP to check my ANA again and he looked for false positive with both syphilis and Aids, I had a list I wanted him to check for but those were the 3 he would check on my list. I wanted the whole lupus panel where there is a big list of blood work they do, but he said he wouldn't do that one unless this ANA was positive which it wasn't, so that's where I hit a road block. I've now withdrawn and have become hesitant to bring Lupus back up because it's like talking to a wall with my GP and I get laughed at by my Rheumy with the haha Rhupus thing, but not taking the time to consider its possibility. My rheumy isn't the best with listening much, I'm considering getting a new one maybe a female this time, or just someone who is willing to take the time to explain everything going on and what they think. I live in a small community where I have to travel 4 hours just to see my rheumy and I always walk away feeling brushed aside with a new prescription in hand.

Yes my GP has been monitoring my Blood pressure, but hasn't done anything about it. Also with the protein in my urine they always brush it off saying females sometimes have it cause we bleed, but I don't get a period anymore because of the type of IUD I've got, but they don't consider that either, umm there's still protein in my urine. I've heard that since I was 13, I'm 34 now.
 

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Hi again.... if your diastolic (low BP number ) is over 90 consistently, and especially if you have an autoimmune problem.. it is usual practice to treat. You said yours was 105.....that needs treating...not doing so further causes issues for your Kidneys and often if they are in distress the BP will climb.

Your GP should know this and put you on some kind of BP monitoring/control.......my Rheumy insisted I went on a low dose anti hypertensive drug as soon as he realised something autoimmune was happening to protect my kidneys even though my BP was fine..... that is good practice as the Kidneys are quite delicate.
I have to say I am really unimpressed with your care...it is just littered with mismanagement from what I read :0(..... I would def be seeking another opinion...and to not run the whole range of bloods is just breathtakingly careless . You have been dealing with this for so long...it is such a shame no Dr has actually got on and dealt with it in it's entirety.............Claire
 

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Discussion Starter · #14 ·
Hi ladies.

Yes I'm quite concerned with my blood pressure being consistently high for 2 years, the lower number has been from low 90's to like I said 105, the top higher number actually fluctuates from the 130's to mid 150's but that bottom number is always over 90. Who knows maybe I am having some kidney involvement, I've landed in the hospital twice this year with what they suspected were kidney stones because I have severe flank pain, but that was never proved, I was sent for ultrasound on my bladder and kidneys a month after the last episode. The hospital where I live doesn't have any radiological technology other than an X-ray machine, it's a small community of under 5000 people, so we must travel for care at proper medical centres.

So I mentioned I had to do a bunch of baseline blood work, x-rays and the TB Skin test. I hadn't really looked over the blood work while I was talking on here and stuff and I noticed he ordered a few new blood tests. One that I've actually been asking for too, the anti-dsdna
I'll list what he ordered as the baseline bloodwork to start this Remicade.

Hepatitis B Antibody
Hepatitis B Antigen
Hepatitis B total core

Hepatitis C Antibody

ESR Westergren

LDL - Lipid Panel

RA- RA Factor

CRP

CCPA- Anti Clyclic Citrullinated Peptide

ANA

ENAS- ENA SCREEN

DNAA- Anti-dsDNA

I hope something in this lab work shows what's going on. Here's to hoping!!

Kate
 
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