Forcing Diagnosis through deliberate Flares?

[lsavery]

Hi, I'm new here and have sort of come here out of desperation.

For the last 7 years I have had health issues covering all of the classic symptoms of Lupus but blood tests have always shown negative ANA.

Was sent to rheumatologist who said likely to be Lupus (excellent) and come back in 6 months to see progress and to be put on medication...6 months later, different rheumatologist, now NOT Lupus but Fibromyalgia, go away, it's for your GP to sort.

After many years and being told its not Lupus I thought I would experiment over this summer. Simple...Lupus + sunlight = Flare, so if I sit in the sun for a while I should get worse.

And what did I find, 40 minutes of sun = 8 days of agony. So correlation.

Went to my GP...Negative ANA, not Lupus. Must be depression/anxiety take Citalopram.

So I'm at my wits end. After years of pain, fatigue, poor sleep, headaches etc I'm now looking at an alternative approach...

If my Lupus flares with Sunlight, and I deliberately put myself into the sun to induce all the worst that Lupus has to offer, would this force a diagnosis? I am well aware of the risks, but at this stage I would rather have a proper diagnosis and a treatment plan, rather than a slow downward spiral.

Any suggestions?

TIA.

Lee.

[Paul_Howard Partner LUPUS UK]

Hi lsavery ,

I can understand your desperation to get a diagnosis for the cause of your symptoms, but I don't think that deliberately making yourself ill is the best approach. There is no guarantee that a flare of your symptoms will cause your blood test results to change - there do appear to be a minority of people who present with seronegative versions of these diseases (meaning that it will not show up in the blood tests).

I think it would be best to try and request a referral to a different rheumatologist for a second opinion, preferably one with a specialist interest in lupus who is likely to have more experience with less 'typical' presentations. If you let me know what area you live in I can provide you with information about any lupus specialists we may know nearby.

Please take care of yourself. It is important to bear in mind that not all symptoms of lupus present with noticeable symptoms until the later stages (ie. kidney damage) and it could be dangerous to deliberately trigger a flare.

For more information and advice about getting a diagnosis of lupus, please take a look at our article here - lupusuk.org.uk/getting-diag...

[lsavery in reply to Paul_Howard]

Hi Paul,

Thanks for the response.

The biggest problem I have is my GP is refusing to refer. If I could get past him, then maybe I'd have a chance but his view is no-ANA, no Lupus, no Referral.

I'm well aware of the systemic problems that Lupus can cause, that's one of the reasons for inducing flares; sometimes the only way to stop a fire is with a bigger fire.

I live in Wellingborough, Northamptonshire.

Any support you can offer is greatly appreciated.

Lee.

[Paul_Howard Partner LUPUS UK in reply to lsavery]

Hi lsavery ,

If you are having trouble with your GP, perhaps you could change to a different practice? Information about doing this is in the article I provided a link for in my previous comment.

If you are able to travel to Cambridge, Addebrooke's hospital is a Centre of Excellence for lupus. This would be a good place to get a referral.

[lsavery in reply to Paul_Howard]

Thanks Paul.

Moving GPs is problematic, small village so nearest alternative quite a trek. Will keep trying and look at possibilities. Thanks for the info on Addenbrooke's. Will just have to keep trying.

Lee.

[LupusKaren in reply to lsavery]

Lee your from my home County, my parents live in Rushden. Your post is where I was, but 12 years ago. I will not waffle on, but will one million per cent, encourage you to get a referral to Addenbrookes Hospital, my Rheumatologist was the last consultant I vowed to see, she had already read though my doorstop of a medical file, and was 99% sure of the diagnosis of Lupus based on my history, and soon as she looked at me, 100% sure.

I will PM over to you her name, as it will be important you see her if possible, as she does not wholly rely on blood tests, which tend to be unreliable anyway, but look at the whole picture, and the whole of you.

Ditto what Paul says, whilst I understand why you put yourself out in the sunshine, honestly you could if this is Lupus, enable it to do more damage to internal organs etc, Lupus is devious, and mimics other conditions, which can lead people into false senses of security, not to be messed with, trust me.

Keep in touch Lee, if you need an ear, more than happy to be that ear.

Stay strong, focused, and do not let people fob you off.

[LupusKaren in reply to LupusKaren]

Lee for some reason cannot PM you, could you try PM me, and I will see if I can reply.

[happytulip in reply to lsavery]

Sorry, but your GP is an ignoramus. ANA -ve lupus exists. I am living proof of that and it makes me so cross that GPs aren't educated in this matter.

It took 32 years for me to be diagnosed because of idiot GPs and I've had organ damage as a result of the length it took.

Go to another GP and put a good case forward, or can you go private?

[happytulip in reply to happytulip]

And your GP should also know that a Positive ANA doesn't mean you have Lupus either.

Sorry to sound so cross but I'm going through the Mother of all flares and it makes me so angry that GPs dont know the basics of an ANA.

I'm medically trained but had to be retired at the age of 35.

In medicine you treat the patient and symptoms, not the blood results!

[Comeonpeeps]

Does the sun trigger rashes? If so, show your GP and insist on a referral to a dermotologist, or see a different GP for a referral for photosensitivity tests.

[AnnNY]

Please don't do it!!!

When my illness first started, I didn't have joint or other pain. Really the only thing Lupus like was weird sun rashes, and it never it occurred to me it was relate to my other symptoms. Just as I was improving from my first flare, I was in a situation where I couldn't get out of the sun and was burnt to a crisp. Three days later I couldn't move my elbow because of the pain. I didn't have a doctor, so just waited it out, but I have been in pain ever since. Many months later when I assume I was tested for ANAs or had enough lupus symptoms to be tested, nothing. I wondered if I had been tested just after sun exposure, I would have been positive. Maybe six or seven years of basically good blood tests, but feeling very sickly, a rheumatologist put me on plaquenil regardless and lo & behold I began feeling so much better. I got ANAs once in awhile, but still no high titers, so some docs still thought lupus was a delusion. I still had symptoms, but flares were short, and I did get sloppy in the sun, since the sun didn't seem to bother me as much, just aching, tired and some mild neuro symptoms.

I spent two days happily in the sun, and then had a very bad neuro episode and ended up in the hospital with seizures. Guess what, no ANAs. High inflammatory markers, but nothing specific. Finally got myself to a good rheumatological center, saw many US specialists, and while there was an outlier, usually very uneducated GP/PCPs generally considered lupus-like UCTD ,APS, and Sjogrens. I have been found after more testing to have a secondary antibody found it APS, a positive for an antibody to SJogrens to a screen that isn't universally accepted, and to an antibody that isn't tested for anymore--antimylen antibody, and a skin biopsy that was positive that was positve but they don't care about, and from the beginning a high SED rate.

If you get to a better center of rheumatology, a more open-minded rhemy may find there is enough evidence to put you on plaquenil or a trial of prednisone. Ask. This has helped me, because although universal validation would be nice, finding something that helps is really the important thing. (I think my family still thinks I'm a hypocondriac.) If you are young, you have reason to hope that things will improve as far as the recognition that some of us do fall in more unusual category.

Hope this makes sense. I put my cream cheese in the toaster this morning, so may not be a clear as I would like. Oh, and do take pictures of rashes, particularly facial rashes, swollen or red joints, or video of unusual speech--anything that you can document with evidence. Also, write down symptoms.

[EG74 in reply to AnnNY]

My history is similar after requesting a second rheumatologist I practically told her the first rheumatologist was wrong and I read her all my symptoms from going to an emergency hospital abroad diagnosed with urticaria after mosquito bites and any small or big incident I had. I don’t suffer from sensitivity to the sun yet but I always take care of it. I felt like telling my rheumatologist that I’m certain I had lupus and after more blood samples, she called to put me in HCQ. It’s a battle to get a diagnosis in the U.K.

[happytulip]

I agree with Paul. Dr Hall and her team at Addenbrookes recognise and treat ANA-ve Lupus.

Make a list of all your symptoms, take photos of every rash etc.

Ask for a referral from your GP, it is your right to have a referral and second opinion.

If all else fail, Dr Jordan works at Addenbrookes and I think she also does private work at the London Bridge Hospital.

Good Luck

[happytulip in reply to happytulip]

And don't put yourself into a flare intentionally. I landed up with reccurent pericarditis by exposing myself to too much sun and you won't change your ANA by doing so.

[Melba1]

Hi, can totally understand how you’re feeling. Many of us have been at this stage of desperation but please don’t risk your health. As others have said, the sun exposure may make you very poorly but also, if you’re one of those people (and the good rheumys will tell you there are many more than the 5% commonly cited) whose ANA doesn’t change much then the sun won’t change that. Have you looked at the ACR or SLICC criteria? If you google it, you can see which criteria you fit and you can take it into your disbelieving GP, highlight the ones you think fit and show him that a positive ANA is only one of the criteria and not at all essential for diagnosis (and more importantly treatment). If you can get to Dr Hall or Dr Jordan at Addenbrookes they definitely do not see ANA as essential for diagnosis. My ANA is sometimes positive sometimes negative and even now, many years after a firm diagnosis and several hospitalisations/ life threatening flares I still get the odd dr in hospital trying to send me home without correct treatment/ testing because my ANA and dsDNA blood tests were negative. I now have a rheumatologist who has written that the standard blood tests are irrelevant to my type of lupus and he gets in touch with whatever hospital I’m admitted to and makes sure they know this and do the right thing. Lupus presents in so many different ways, bloods are a small part of the full picture. I hope you get a referral to addenbrookes, I had an appointment with dr hall a few months ago and instantly felt in safe very knowledgable hands (and if she does become your rheumatologist she would be very cross about exposing yourself to sun so don’t risk it 😬 she was very sympathetic and kind with me but not at all impressed with my hot holiday choices and the fact i got very ill straight after!)

Maybe if your GP still won’t refer you then you could put your request in writing to him and the Practice manager with your reasons why you think it might be lupus (attaching the criteria and maybe some articles on reasons for ANA negativity!) and asking them to write to you giving their reasons for not referring you? I think it is much harder to write a refusal and if they try to justify it in writing they may realise that it is not right to refuse it.

I’m afraid you have to be persistent at this stage which is very very hard when you feel so poorly and desperate and you just want someone to take responsibility for making you better. Keep trying and we’re all here if you need us.

Good luck xx

[happytulip in reply to Melba1]

Totally agree. Dr Hall is so open minded and she listens to her patients. I've only ever seen Dr Jordan at conferences but I have heard very good things.

Their Registrars are really good too which shows good leadership from the top down.

[Treetop33]

It's awful you aren't being taken seriously. One thing you might do (if you have any savings) is go to the London Lupus Clinic. Excellent docs who understand the blood results do not tell the whole story.

[leslieliesel]

Have the Dr Biopsy your rash..that was how I was finally DX'd..yet my ANA was very high

[KayHimm]

Sun sensitivity is important to the diagnosis. Were you clear with your doctor about what you experienced? What were the symptoms that lead the first rheumatologist to suspect lupus? Can you contact him? You are in a difficult spot because you were hopeful of a diagnosis. You do not seem at all confident that fibromyalgia explains all of your symptoms. You deserve an explanation of the doctor’s reasoning.

[Kerrclan]

Hi Isavery. I am so sorry you are in this situation. Like many of us in the beginning and approaching diagnosis, you are lost of a way to prove that you are actually suffering debilitating clinical symptoms. What concerns me most is that you are not receiving any treatment which is potentially harmful if not addressed. You must research another GP within travelling distance in order to receive a hospital referral to a reputable Rheumatologist with a special interest in Lupus. I have been treated as ANA NEGATIVE Lupus for four years now. I have many clinical signs & symptoms which my Consultant advises best fits ANA negative Lupus. All other diagnosis have been ruled out but it takes a long time. Rheumatology disease pathways vary and can take years to present as one typical recognised diagnosis. My journey has twisted and turned and is anything but typical based on ANA positivity. But it is absolutely typical of Lupus. Once you find that one person who listens and treats your symptoms you will be able to move forward. You must act now. Keep in touch with health unlocked users. We have all been where you are now. Keep a photo and written diary of your symptoms. See Lupus UK for a re ord sheet you can print out and read valuable advice on how to prepare for a Gp appointment. I really wish you well. Apply factor 50 suncream and keep out of the sun completely. Find a friend to talk to or log on here.

Take care

Kerrclan