Possible Lupus?

[Staceylouise90]

Hello,

I was wondering if anyone could give me advice, I have been feeling poorly for the last few years with different things, but the last year I’ve been getting a lot worst, last night my doctor called and said 2 blood tests came back positive, ANA autoimmune and dsDNA Elisa, they were both raised significantly, she is saying the possible cause could be lupus, please see attached my results from this test.

To explain my story, I am going undergoing test for issues I’ve had with my left lung, infections and breathless and pain , X-ray has showed some scarring an thickening and have a ct the end of November, Over the past 6 months I’ve had so many bloods done and the ones which have been abnormal are low b12 ( has injections for 2 weeks) red blood count, hemaglobin, high ferritin levels and low albumin along with these autoimmune tests, X-ray showing some damage on my left lung.

I am currently on day 3 of being in bed feeling unwell again, my symptoms are bad fatigue, joint pain, severe headaches, chest pain and abdominal pain, seems to spread across my body, I get coughs (coughing up blood) and colds all the time and have a few raised patches on my skin, oh and red face most days!

My GP has basically said this is the results and she will pass to the respiratory people but hasn’t actually made a plan regarding these ANA AND DSDNA results, I’m feeling that I’ll I even considered going to hospital this evening, just wanted to know if anyone has any advice or what my plan should be or anyone’s thoughts.

Thank you

[KayHimm]

It sounds like your doctor has been concerned about autoimmune disease with you and that significant tests have come back positive. Your doctor will likely send you to a rheumatologist.

I know this is a very stressful time. You sound very unwell today. With your chest pain and severe headache, I think you should go to the A & E. It is better to be cautious with these symptoms.

Keep in touch. Hoping you feel better.

K

[Staceylouise90 in reply to KayHimm]

Thanks for your reply, I’ve been to a n e few times the last 6 months with different at times that now all make sense and they just send to assessment to see a doctor of which he says either aniexty or stress, which clearly isn’t the case as all bloods are starting to show something isn’t right but I now feel reluctant to go, I suppose if I feel bad tomorrow I will have to go and maybe take the tests with me... do you think it would be a good idea to see my GP tomorrow to discuss these results and see whether her plan will be refer me, just unsure what to do with how unwell I’m currently feeling.

[KayHimm in reply to Staceylouise90]

Yes, you should see you GP tomorrow. It sounds like your symptoms are much worse these past few days, right?

Take your temperature and note any new symptoms.

Don’t let your past experiences keep you from getting treatment.

K

[Staceylouise90]

Hello pippa,

I don’t know even know, my GP Called last time and said the ANA and ds DNA are positive and said she is sending the results to my respiratory consultant as this could help her diagnosis that issue? No mention of a plan going forward, said she would print these off for me to look over? She said possiable cause of these results are lupus?’ But is that the case with these results!

I called the respiratory consultant to advise these results are going over to her, but this isn’t helping the fact I’m unwell and also these results that have came back, does these 2 results mean I could have lupus? I just don’t know, I’m going to call the GP first thing and say I don’t feel well whatsoever and what does these results mean and what is the plan going forward.

All I have is the print out from my GP With those results? I don’t know what is going on apart from feeling extremely poorly xx

[Treetop33]

Hello. I'm sorry there seems to be so much delay for you and it's hard battling docs when you are feeling so unwell.

I was diagnosed three years ago with positive ANA and dsDNA antibodies, and my experience is GPs faff around a bit, which doesn't help you if you are in pain. I took myself to the London Lupus Centre in London Bridge (private) for a consult (after I collapsed) with the blood tests and the lovely Dr Kaul wrote me a prescription for zentiva hydroxychloriquine and suggested I get a prescription from the docs for steroids. It took two days of steroids for the pain to go away. The hydroxy took about 6 months to work. The GP also sent an urgent referral to Guys for an NHS consultant. I did all this with my partner in tow.

It's never perfect and the NHS is overloaded right now. I just felt that I had to invest some money in getting urgently seen. I go back to see Dr Kaul once a year. Take care x

[Staceylouise90 in reply to Treetop33]

Thank you for you’re response.

Did you have just one blood test that came back positive for ANA and dsDNA, a with one blood test is it likely I have lupus?

Regarding going private this is something I am considering and this has been going on so long now. The cost roughly to see a private consultant is it a lot?

I know the NHS is so overloaded, I just don’t understand why no one is looking at all these results and realise hey, somethings defiantly wrong with this woman, I will speak my GP today, no it no luck or my chest continues to get bad I think I will just go hospital myself... I just feel stupid if they say what’s your issue.. as my symptoms are everywhere! X

[Treetop33 in reply to Staceylouise90]

GPs aren't always very educated about autoimmunity. It took me years to get diagnosed and only did when I had an increase in symptoms and a new doc who happened to also manage someone with POTs so was alert.

But yes, I was diagnosed on one blood test and put on medication. The private consult cost £270 for one hour. It was worth it though and I've learned to put some money aside to pay for the odd need I have to go privately for.

One caution. If you are in crisis A&E is important, but bear in mind they aren't experts either. You need a rheumatologist. Lupus affects everything, and you need to get the Lupus under control.

Feeling stupid and being gaslighted by medics is just something you'll have to get used to. They aren't all like that. And you need to devote some time to this too. But it is your life and you are entitled to get care x

[Staceylouise90 in reply to Treetop33]

Thank you, I am going to book appointment to see someone today at the GP surgery, if I don’t get anywhere I will simply say I will go a n e, I just find it hard with a n e as I feel they will not have a clue what I’m talking about and say my GP will need to deal with this.

Definitely private appointment maybe on the cards if this doesn’t get sorted soon, this has been going on for many years if I’m honest.

I seem to gaslighted a lot throughout this whole experience, I’ve had so many abnormal tests but no one seems to understand what’s going on, perhaps this positive test is the explanation! ( I hope )

Thank you so much for your advice x

[TM1970 in reply to Staceylouise90]

Stacey I was dx with the same bloods and your dsDna is high enough to be conclusive. The GP is not qualified to read these results, you need to tell them you want speedy referral to rheumatologist, not just respiratory, they deal with one speciality, rheumatologist deals with overall. If you can’t get to see a rheumatologist or it takes a while, consider going private for initial consult and hopefully they will transfer you to their nhs list. But based on my experience I’d say there’s a pretty good chance you have SLE. X

[Staceylouise90 in reply to TM1970]

Thanks for your response TM, I know I just went today as I can’t move literally... I’m in a lot of pain and feeling under the weather and I sat there shaking looking very ill and he just didn’t seem to help other than pass the buck onto my respiratory consultant ?! x

[Staceylouise90 in reply to Treetop33]

Hello, quick update - went to the GP this morning and saw a different one as mine wasn’t in today, he looked at my tests and my symptoms (most recent X-ray) and results and said his pretty confident it’s lupus judging by the results and what I’m displaying. I got a call from the CT scan department they’ve pushed my ct scan to Monday rather than 27th November... my respiratory consultant must of read the blood results and moved it. I have left her a voicemail as my GP suggested that my respiratory consultant can refer quicker than if my GP does to rheumatology, he thinks the scarring on my left lung which is showing on X-ray and narrowing of my airways are connect to lupus and maybe it’s attacked that organ? - makes sense.

Another day of being in bed he gave me Prednisolone steriods he said will help with the pain in the meantime, as I pointed out this morning I feel like my entire body is shutting down if I’m honest, the pain in my back and chest when breathing in is getting worse along side pain in my legs and hands and stomach. I generally am unsure if I can continue to function like this untill Monday? I’m missing university and also struggling to care for my autistic son, and I need to be on top form not this poorly. Thank you all for your advice and help.

[KayHimm in reply to Staceylouise90]

So glad you were able to see a doctor today. I was wondering if the reason your GP wanted the pulmonologist involved was to get your referral faster. With your new lab work the consultant who has been treating your lung issues can confirm that you need a referral and can make decisions as to how to proceed. Your GP didn’t explain the plan very well. He must have known the pulmonologist could get the CT scan earlier.

You are being cared for. So sorry you have had to go through this long process of not knowing what is wrong.

Hang in there. And don’t hesitate to reach out for help here, the A & E, or your doctors. Everyone is there to help you.

K

[Staceylouise90 in reply to KayHimm]

Thank you Kay, I do understand that because I’m under respiratory they probably have better access to rheumatology and have prob seen these issues before, especially is it is lupus that is affect my lung. Like he said today, lupus isn’t really brought into the doctor surgery with positive tests because each person has different symptoms and I guess I’ve hit the jackpot with the positive tests it’s just getting into the right direction whilst feeling ill in the meantime. My CT SCAN is Monday thankfully they’ve brought it forward I am still to discuss all of this with my respiratory consultant which I left a voicemail and no call for the second day running, will try again tomorrow. I’m sure in her career she’s seen someone with possible lupus with lung issues. Thank you so much for your advice. Xx

[KayHimm in reply to Staceylouise90]

More than that. She is the expert on lupus and the lungs. I live in the US where we have less restrictions regarding specialty referrals. We would be referred to a pulmonologist if we had significant lung issues. Rheumatologists coordinate care and work with other specialties to care for patients.

You are in good hands. Your GP has been impressive - diagnosed you and now getting the information to the doctors who can help you fast.

There are many people here who see a specialist like for kidney, heart or lung issues more than than they see a rheumatologist. It all depends on which organs are involved.

XK

[Staceylouise90 in reply to KayHimm]

Thank you, I know I suppose because it’s been going on for so many years I just am at the point that this flare up is really affecting but also in the same light I am grateful for an answer ( well sort of ) I am in the right direction thankfully for those 2 blood tests. Really appreciate it without this forum the last 2 days I think I would be going insane! Xx

[KayHimm in reply to Staceylouise90]

You have been pretty ill for years with no answers. It is a horrendous situation. It sounds like this last flare has been severe enough to make you diagnosable. Not much consolation, I know.

I was concerned about you last night with your chest pain and glad you saw the doctor.

Take care of yourself. You should feel better when the medication kicks in. Rest.

XK

[Staceylouise90 in reply to KayHimm]

To be honest when the chest pains comes and pain when I breathe, I am so used to the pain that I don’t panic anymore. The only reason why I am worrying more so today is how increasingly bad the pain is and how I’ll I am feeling, I am hoping for the steriods to kick in soon and maybe that will help. I will continue to push tomorrow to speak to my consultant and maybe that will help regarding my chest pain and my breathing. Thank you though, I feel more happier this evening even tho I’m ill but I know I’m ok.., if it gets as bad as last night I will end up somewhere no doubt! xx

[KayHimm in reply to Staceylouise90]

Well, worsening pain is a reason to be concerned. Don’t hesitate to go to A & E if there is any change. And definitely talk to your pulmonologist tomorrow.

I think you feel better just knowing you are being cared for.

XK

[Staceylouise90 in reply to KayHimm]

Thank you Kay for your support , I shall xxx

[Staceylouise90]

I agree, I’m going to call my GP surgery first thing this morning and ask to do somebody. I just don’t think I can wait another 6-8 weeks for appointment with a specialist whilst she refers me as I must feel horrendous.

I am not receive no treatment for lupus, she simply told me those results printed them off and left them at reception and also passed those results to my respiratory consultant regarding the issue with my left lung, nothing more has been said, I’ve been up all night so I think I will definitely want some answers today!

Thank you so much.

[overnighthearingloss in reply to Staceylouise90]

If you chat with admin they should be able to advise which hospitals in your area have a lupus specialist.

In ordinary circumstances a referral to a specialist could take many weeks or months. If you were to attend an a&e at a hospital that had a specialist, if the a&e staff judged you as particularly unwell they may expedite your seeing one of their own staff. Maybe.

If you were to attempt that approach I would suggest taking copies of your recent bloods with you.

[Staceylouise90 in reply to overnighthearingloss]

Hello, quick update - went to the GP this morning and saw a different one as mine wasn’t in today, he looked at my tests and my symptoms (most recent X-ray) and results and said his pretty confident it’s lupus judging by the results and what I’m displaying. I got a call from the CT scan department they’ve pushed my ct scan to Monday rather than 27th November... my respiratory consultant must of read the blood results and moved it. I have left her a voicemail as my GP suggested that my respiratory consultant can refer quicker than if my GP does to rheumatology, he thinks the scarring on my left lung which is showing on X-ray and narrowing of my airways are connect to lupus and maybe it’s attacked that organ? - makes sense.

Another day of being in bed he gave me Prednisolone steriods he said will help with the pain in the meantime, as I pointed out this morning I feel like my entire body is shutting down if I’m honest, the pain in my back and chest when breathing in is getting worse along side pain in my legs and hands and stomach. I generally am unsure if I can continue to function like this untill Monday? I’m missing university and also struggling to care for my autistic son, and I need to be on top form not this poorly. Thank you all for your advice and help.

[pmay50]

I have never posted on here before... just follow this forum because doctors in US are considering a lupus diagnosis for my daughter... but I felt compelled to reply when I read about some of your test results. My daughter was initially diagnosed with secondary or “acquired” HLH, hemophagocytic lymphohistiocytosis a couple of years ago. It is very rare and was completely unknown to any of the docs in the area where we live, but luckily she was transported via ambulance to one of the top 10 children’s hospitals in the US that is only about 60 miles away. Anyways, one of the things that lead to the diagnosis was a ferritin level that continued to rise once admitted, along with low albumin, low Platelets, low RBCs and low WBCs. Her liver enzymes as well as kidneys and a bunch of other labs were all abnormal and it was life threatening. HLH can be primary if it is genetic, which hers is not, or it can be secondary , or caused by a virus, cancer or autoimmune disease. The two most common autoimmune diseases associated with it, from what I’ve read, seem to be juvenile onset rheumatoid arthritis and lupus. My daughter did have a rash on her face at the time, her ANA has been at 1280 for several years despite steroids, hydroxy and azothiaprine, her C4 is always low, C3 is trending down, WBCs are almost always below normal, has joint pain, extreme fatigue, headaches, and brain fog... but has been given diagnosis of connective tissue disease versus lupus because dsDNA and other antibodies are negative. She went into acute liver failure and hepatic encephalopathy one year after HLH crisis . She was diagnosed with autoimmune hepatitis and was in the ICU and started on steroids again, along with azothiaprine... and luckily started to show some response, otherwise, they had already had us sign all the paperwork for a liver transplant. Her liver has recovered but she still feels very unwell a lot of days, hence is being treated for “pre-lupus” by Rheumatologists... kidney docs and a bunch of other docs we’ve run across throughout her multiple lengthy hospitalizations all elude to fact they think it is lupus... but she doesn’t check ALL the boxes to satisfy the Rheumy.

Anyways, sorry for being so long winded... just really felt the need when I saw “high ferritin “ in your post... since HLH is not very well known. I’m a nurse, and none of the doctors in my entire clinic had even heard of it... her pediatrician had sent her home several days prior saying she “just had a virus “, the Emergency room my daughter originally was in, had no clue and was considering sending her home, attributing the abnormal labs to vomiting... but the doctor I work with encouraged the ER doc to transport her to Chicago....which saved her life.

I’m not saying that I think you have HLH because there are a whole slew of labs that have to be off, but Ferritin is a hallmark one. Usually the norm is below 300 I think... my daughter’s kept rising the first couple of days until a diagnosis was made and high dose IV steroids were started...her Ferritin level reached over 40,000! I thought this post could maybe provide useful info on HLH that could help save someone else.

[Jmiller623 in reply to pmay50]

Hi Pmay! HLH is completely different and much more dangerous than lupus as it can progress quite quickly (days) as I’m sure you know and requires immediate treatment which can include chemotherapy like etoposide or even rituximab. The standard treatment is protocol HLH-94 if severe enough as in your daughters case. It is normally caused by EBV - mono virus. It can have very similar labs to lupus but hallmarks are splenomegaly, low platelets and red blood cells and of course, hepatomegaly. If ferritin is really high like in the thousands, HLH relapse must be considered. This rarely happens all together or as severely in lupus. I’d be hard pressed to call it pre-lupus.

There are trials for stem cell transplant and newer targeted immunotherapies. I am so sorry that this happened to your daughter. As to not hijack this post, I am more than happy to discuss in private message. I hope she’s doing better. HLH is no joke! Thank you for sharing. It could save someone’s life for sure.

[Staceylouise90 in reply to pmay50]

Hello Pmay, thank you for your post and I’m so sorry about your little one, I do not have much understanding in any of this I’m trying to get to the bottom of what’s going on, I went to the GP today and he is pretty confident I have lupus and it’s attacked my left lung as there some damage showing on the X-ray and I have a ct scan Monday and my respiratory consultant will refer to rheumatology. I did ask about my ferritin levels and he said it could be all connected and I would need to discuss this with a rheumatologist.

It sounds like you and your daughter have been through a lot, and I know personally it’s hard as you never seem to get to the bottom of it unless something terrible goes wrong in the time.

I hope you get all the support and help you can, this forum seems to have a lot of information and perhaps could help your end. Keep staying positive and I hope she gets the best care. Xx

[Staceylouise90]

Hello, quick update - went to the GP this morning and saw a different one as mine wasn’t in today, he looked at my tests and my symptoms (most recent X-ray) and results and said his pretty confident it’s lupus judging by the results and what I’m displaying. I got a call from the CT scan department they’ve pushed my ct scan to Monday rather than 27th November... my respiratory consultant must of read the blood results and moved it. I have left her a voicemail as my GP suggested that my respiratory consultant can refer quicker than if my GP does to rheumatology, he thinks the scarring on my left lung which is showing on X-ray and narrowing of my airways are connect to lupus and maybe it’s attacked that organ? - makes sense.

Another day of being in bed he gave me Prednisolone steriods he said will help with the pain in the meantime, as I pointed out this morning I feel like my entire body is shutting down if I’m honest, the pain in my back and chest when breathing in is getting worse along side pain in my legs and hands and stomach. I generally am unsure if I can continue to function like this untill Monday? I’m missing university and also struggling to care for my autistic son, and I need to be on top form not this poorly. Thank you all for your advice and help.

[TM1970]

That’s a great result. Sounds like you’ve an excellent GP. X

[Sekka]

Agree completely Pippa! Take charge. Lots of love and keep us posted Stacey Louise90.