possible Lupus - advice please

[Silvertabby84]

Good morning.

I am a 40 yr old female. I have severe health anxiety which was triggered by low iron that I suffered with last year.

I have sought advice from a B12 specialist who has started me on regular B12 injections and took bloods. My bloods were returned with what I am told is a very low level ANA <=1.80 and that this could possibly be an autoimmune issue. I am scared to death and had no idea these tests would mean more uncertainty.

I paid privately to see a GP last week who said she does not think I have autoimmune issues but she thinks I need to hear this from a rheumatologist so has referred me and I have an appt this Friday. Luckily we have private insurance so this has been quick.

I am not sure if my brain is playing tricks on me due to my anxiety but ever since I had this email with the ANA result I have started getting symptoms in that my hips and back ache. I also had a tight chest last week which I know could have been my anxiety. I have been taking Mirtazapine to help with my anxiety and sleep and increased this last week so I am not sure if the chest could relate to this.

I am generally fit. I love walking and normally take the dog 5k a day. I also have horses and a young family so am constantly running around.

I am not sure what to expect from my appt this week. I am so worried this is Lupus or something similar. Is this better if it is that I have found out early treatment wise?

Any help or positive words would really help right now.

thank you so much xx

[Spanielmadlady]

Hi silvertabby. Try not to over think it too much. A titre of 1:80 is weak positive but a percentage of the population have that result without having any AI illness so without other positive blood results like DSDNA or compliments its unlikely anything would be done on that result alone.Some rheumatologists won't even see you with that result. There is a criteria for lupus you may find useful. Fatigue is a huge symptom that affects most of us I'd say often to the degree where we struggle to get out of bed in a morning and need naps through the day. I have a dog and struggle to walk 1 mile some days. B12 defiency anaemia is auto immune so fingers crossed once you've had your loading doses things will improve. It may be worth getting your thyroid checked as that often goes hand in hand with b12 deficiency. Hope appointment goes well SML x

[Silvertabby84 in reply to Spanielmadlady]

thank you for your reply.

I do have fatigue but I could put that down to my anti anxiety tablets. When I say fatigue, I sleep well and could nap in the day but I rarely do. I walk quite a lot and don’t usually feel worse after.

I am not sure what to expect from my appt with the rheumatologist. Are they likely to take more bloods? Can I ask what your first symptoms were and how you manage please.

Many thanks x

[Spanielmadlady in reply to Silvertabby84]

I'd expect them to if they suspect any other AI issues.I'd also expect urine, BP etc. It is very complex with a lot of overlap so it won't be a quick process it can be a long journey to diagnosis.There is no difinative test and bloods can flit between positive and negative so often a wait and see approach is adopted.

First symptoms is a difficult one because with hindsight I suffered with fatigue and periods issues in my teens. I became unwell in 2013 with a chest infection which led to pleurisy in both lungs which inflamed my heart. 5 yrs later I got a diagnosis after seeing a respiratory specialist who advised me to reduce the steroids and I went stiff. That led to my first rheumy appointment. Routine urine was off the scale and I was sent to the renal unit at the Royal Preston where a biopsy revealed class v lupus in my kidneys. Often damage is done before symptoms appear. I have to pace myself, limit sun exposure, wear factor 50 and sleep. I've also had to remove dairy from my diet as that was the cause of gut issues. There is a wide range of symptoms and we all present differently. I also take a shed loads of meds inc hydroxychlorquine, 2 lots of immunosuppressants and I'm steroid dependant as that's the only drug that keeps my lungs stable. It is all manageable but it takes a lot of compromises especially being immunosuppressed means limiting contact with others to avoid bugs.

Stress is a big trigger in AI illness and must be kept to a minimum x

[Silvertabby84 in reply to Spanielmadlady]

Thank you for all of the information. It sounds as though you have been through an awful lot. I have read that it can take years to diagnose sometimes.

I am just praying for not horrendous news. I have a lovely little boy who is always the front of my mind x

[MrsMarigold]

Silvertabby 84 : Are you so tired that you can not vacuum or make your bed? Is your hair falling out? Do you have joints that are red swollen and hurt so much walking is unbearable? Do you have skin rashes on your face, or anywhere else on your body? Do you have mouth sores/ulcers? Or in your nose? Do you suffer from urinary infections and have kidney pain? Are you photosensitive/ breaking out in rashes and burning skin in the sun?

Lupus is a disease revealing itself in blood tests but also clinical symptoms as listed above. Your symptoms as stated sound like anxiety. However, when you see your rheumatologist it would be wise not to lean too much on your anxiety. Too often lupus patients are put off with a diagnosis of anxiety and then do not receive the treatment that they need. The good news is your blood values are low. It is noted in research that millions of people have a low ANA. Did you have a recent illness or infection? If you indeed have lupus it has been discovered early. Lupus is a tough diagnosis but it does not have to be a death sentence. Some very good treatments are available. Don’t worry. Life is good! MM

[Silvertabby84 in reply to MrsMarigold]

Thank you so much for your kind reply.

None of my symptoms are that bad but as you say I do not want the rheumatologist to just blame my anxiety either.

I am hoping that if there is something AI going on that being diagnosed early will go in my favour.

I am so sick of worrying. I am desperate to not be diagnosed with something but the not knowing is so hard.

Thank you again for your advice x