Confused...

[pollydolly45]

Hi, this is my first post so please bear with me! I have had various blood tests done as in February this year I started with severe roaming joint pain, I have had an ANA of 1:160 over the past 4 years (this was detected due to a severe skin condition) so I have always known lupus might rear it's head one day. When I saw my consultant three weeks ago I was told my blood results, which I will list below, but she would not diagnose me with lupus as I could not prove (with pictures) that my face flares up in the sun, my ankles swell, as do my fingers (I have now taken pictures when it happens) can anyone shed any light on the results below as to be honest I do not know what they mean, they were not explained to me? All my consultant said is that I am in a high risk catergory of getting lupus! I was put on hydroxychloroquine for joints and was told not to go in the sun, but if I dont have lupus why can't I??? Are doctors scared or reluctant to give a diagnosis? I also mentioned that probably once a week I get what I can only describe as a pill stuck in my throat (near bottom of neck and it is very uncomfortable) feeling which can last one or two days, she dismissed this and told me to go to my GP if it continued, is this also a symptom of Lupus???

My blood results were:-

Double stranded DNA 157;

Crithidia positive;

ANA 1600;

Homogeneous pattern;

Ro, La and Ro52 positive; and

CCP and rheumatoid factor negative.

Has anyone any advice, should I seek a second opinion because if I don't have Lupus, what do I have that is causing these things?

Thanks in advance

[Hidden]

I don't actually have a diagnosis of Lupus myself so can't advise on the bloods. But as a sufferer myself I can tell you that you almost certainly have Sjögren's Syndrome with Ro and La positive. These are the specific antibodies for Sjögren's but this doesn't mean that you don't also have Lupus. bssa.uk.net/pdfs/informatio...

Sjögren's is very closely related to Lupus and there is much symptom overlap. It is also a systemic autoimmune disease. This would certainly explain the pill in throat/ neck feeling as it often affects the parotid glands and the lymph glands and can make your throat dry and sore. Like a Lupus it can often cause arthralgia and arthritis and make you feel very tired and unwell. The way it affects me is very similar to MS.

Similarly to Lupus the main treatment is Hydroxichloraquine - but some rheumatologists wait to see whether Sjögren's or Lupus is your primary disease. Some rheumatolgists are fairly ignorant about Sjögren's so you may want to join the BSSA and find a specialist who understand the complexities.

People with Lupus and RA and other connective tissue diseases often have secondary Sjögren's. However primary Sjögren's is different to secondary in the way it progresses. Often it requires opthamology input for dry eyes and a good dentist for dry mouth as well as Hydroxy. The majority of sufferers are ANA positive too - I am but I don't have the more specific markers for any disease. I was diagnosed with Sjögren's by lip biopsy after being misdiagnosed and treated for RA for five years.

The consultant recommended that you keep out of the sun because both of these connective tissue diseases will make you very UV sensitive - not just your skin but also the UV can make you feel pretty unwell - joint pain and dizziness and eye pain in my case. So you should definitely wear a good sunscreen and a hat whichever connective tissue disease you are diagnosed with in the end.

I hope this helps a bit while you wait for the Hydroxichloraquine to take effect.

Twitchy

[johare]

Hi, I cant add much to Twitchys excellent reply. I have lupus, Sjorgrens, RA, and other complications from these (heart, brain, thyroid etc). Its a chicken and egg situation. So many of us are diagnosed late because the symptoms sometimes only show, when any of the autoimmune conditions have progressed. As Twitchy said, there are so many conditions and many of them have similar symptoms because they are attacking or defending, which ever way you want to look at it, you body. The bloods quite often also don't show the true picture until later, which is why doctors are reluctant to give a fixed diagnosis. My bloods have changed over the years. Treatments are very similar.

My advice; don't worry too much about the name of what you have. Cover up in the sun, sun factor 50 always and remember it uv so not just sun. (look at lights inside). Take time to rest and exercise. small breaks to change activity, from physical to brain, sitting etc. Only do what you have to. This is something I had to learn quickly. Try to enjoy things rather worry. You will have good and bad days, but keeping a diary will help you at appointments, to say when your face, fingers etc flared.

Keep in touch.

[Paul_Howard Partner LUPUS UK]

Hi pollydolly45 ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

I commonly hear from people with doctors who will not diagnose lupus because they have no face rash. In fact, the classic lupus malar (butterfly) rash on the face only occurs in around one third of people who have SLE, so not having it should not rule it out as a possible diagnosis.

Are you being seen by a rheumatologist, or was this all your GP?

I'm afraid that I am not medically trained and cannot interpret your blood test results for you. If you are unsatisfied with your current diagnosis/treatment plan though, it is definitely worth requesting a second opinion. It is often best to get referred to a rheumatology consultant who has a specialist interest in lupus. If you let me know whereabouts you live, I can provide you with information about any lupus specialists we may know nearby.

If you'd like more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...