How long have you had lupus?

Hi margarita, my name is Lynn my concerns are for my 14 yrs young grandaughter and her mum , my daughter Jill.  My grandaughter has most if not all the signs of lupus, however a lot of the tests they are doing come back negative ? However the mouth ulcers, rash ,lymph nodes are very evident as is the chronic fatigue and tachycardia. Half the medical profession think it is lupus, (we even took her private because appointments with n h s were taking forever ) when they get her into hospital though they say they don't know what it is ,must just be a viral infection ....the scans showed she had adult sized organs which they thought was unusual , or they could have become swollen because she is fighting infection ? But they can't tell us what infection....she is losing her hair , they say that's typical of fighting infection. She is in agony with her knees , they say there is nothing wrong with them because there is no fluid on them and the arthritis/rheumatism tests were negative .....now my grandaughter is beginning to think she is becoming a hypercondriac???? My daughter is beginning to tear her hair out thinking they think she must have munchousen. We have an immune gene problem in the family and all suffer one way or another with immune diseases but they don't seem to want to take it into consideration ? They discharged her this morning telling her and her mum they cannot find anything wrong with her , but her symptoms have reduced since she was admitted. She has been like this for months ,losing all her friends because she can't attend school . Up and down daily with different symptoms. Her g p is at his wits end . We have a mountain of tests results and photographs of her ...and though one half of specialists say it probably is they won't put it in writing because none of the bloods confirm it ???? We are at the lowest we have been ...she spent a week in Alderhey and another few days in the royal Albert wigan . What do we have to do when those in the know say early diagnosis is crucial and the medical profession say probably but won't put it in writing . Poor Lily my grandaughter is suffering and we can't get any practical help and support . Jill Lily mum is registered disabled herself , they need help is there anyone in their area who could advise and guide and be a friend to them? The area is wn7 3xa. I so hope you can help and point us in the right direction ,thank you . Lynn

Hi @Runnybabnit1‍ sorry to hear about your grandaugther!

Hopefully our members will be able to advise you.

Kind regards,

Margarita

I have had lupus since I was 27, I am now 74. Nowadays it is more the aftereffects of previous flares that cause problems. Constant infections with one kidney and joint,heart and lung damage

Hi I'm Cherezade 

I've had lupus since I was 15 I am now 18. Some days are better then others but lupus has taught me a lot and matured me into a person who appreciates more things and also people in my life.

The tough days were really hard and I almost went into depression but because of the good Lord and my parents I made it through knowing that the tunnel on the other side is brighter then the dark skies I see today.

Can you help. Just been diagnosed with lupus and to be put on hydroxychloroquine, I am concerned about the effect it may have on my eyes. Also if I decide not to take this medication, will my condition worsen. Thanks

@Runnybabnit1 It is common for lupus to be difficult to diagnose. A good doctor who specialises in the disease will usually go by symptoms  and persist with treatment.

@Wishing I have takeb this drug for several years without damage but it is worth discussing alternatives as there are other drugs.

Hi Everyone,

I was diagnosed with Lupus February of this year. I became ill towards the end of December 2017 with symptoms of high temperature, swollen lymph glands, mouth and lip sores, fatigue and loss of appetite.

Initially I was diagnosed with a blocked salivary gland but when my symptoms worsened I was sent for a biopsy of the lymph glands. The result of the biopsy was negative of anything sinister and the Dr's concluded that I had a condition called Kikuchi Disease and that with the help of oral steroids and time my life would return back to normal.

Having spent a week in hospital I was finally discharged and sent home but the problems continued. I was now starting to experience severe pains in my hands and feet, I couldn't use my hands and it became extremely difficult for me to walk. I immediately contacted the Dr who had cared for me during my admission and it was as this point that the penny dropped. He sent me a message saying that he needed me to come in asap as he suspected that I might have Lupus but that this would need to be confirmed by a rheumatologist. I arrived at hospital that same day and was seen by a wonderful rheumatologist who asked me various questions about the lead up to my hospital admission and then she immediately arranged for me to have extensive blood tests. Within 3 hours of arriving at the hospital it was confirmed that I had Lupus. 

To date despite having received various oral medication as well as Retuximab - (a highly rated intravenous drug for Lupus) I am still very much struggling with the condition and have had a number of flare-up's over the past few months. Due to also experiencing headaches and dizziness I've been referred to a neurologist as the scans I had did not detect any abnormalities. 

The past 9 months has really been a difficult and frightening journey for me and I've come to realise that I still have a bit of a way to go in terms of better managing my Lupus, but with the right help and support I know that everything will be okay, 

@FavourofGod Thank you for sharing your story, I hope you find comfort speaking to other members who also suffer from lupus.

It can take a while to get the right combination of drugs for Lupus but with a good specialist it id possible to get improvement. The disease is so variable from day to day that I personally take one day at a time. If I really struggle one day, I expect the next one to be better. One thing I have found, is, do not overdo it on the good days. It is so tempting to think that you must catch up but not worth it.