I have SLE, diagnosed in April 2000. I have no-one looking after me for my Lupus. What blood tests should I be having if any, and how often?

[MandaM]

I have a kidney transplant, this is due to Lupus 'killing off' my kidneys, eye troubles - light sensitivity and multiple episodes over many years of scleritis, rarely iritis too. I have highly sensitive, itchy skin, and quite fatigued mostly, often feel completely rubbish, systemically just not right. I have some small collapsed areas in my lungs,mildish asthma, and something going on cardiac wise which im now waiting for a diagnosis. I'm also prone to extreme belly bloating which has been going on for just over a year now, scans all clear. I only have a renal consultant, this is it. Sometimes I ask for a dna/ana test which comes back as within normal range. Any advice on blood test would be welcome. My daily meds are prednisolone, tacrolimus, mycophenalate for immune suppression, diltiazem and irbesartan for blood pressure, pravastatin to keep chloresterol down, singulair fo asthma plus liquids and cream for my skin.

[Hidden]

Hi mandaM, tough one to answer as quite a mixed bag, !!! You should be looked after by a rheumatologist, as well as your renal team. Often, but not always, we are looked after for our lupus by a rheumy. When other organs are involved, you see a consultant in that field, but the rheumy is very much involved still. Your meds are in line with usual prescriptions, maybe plaquenil/hydroxy chloroquine, is missing, and which drug apart from steroids, is your anti rejection drug ? I only ask as my brother has had kidney transplants, (5) in all. Don't recognise, the one he used to take. (He doesn't have lupus, by the way.) as for your blood tests, you should have 4/6 weekly bloods for the myco, alone. Positive ANA's etc... Are not compulsory to a lupus diagnosis. The fact that you have lost your kidney function, that was caused by lupus, is enough proof. Lupus does not go away, and you are, IMO, clearly in need of further help. You are displaying many poss, other lupus symptoms, and I would see your GP for a referral to a lupus rheumatologist. Your renal dr could do this too, but it think they would have done it already, if they were going to. You will still be in their care, but it's not unusual for a lupus patient to have several consultants. Don't sit and wonder anymore. Phone your GP tomorrow. Good luck

[MandaM in reply to Hidden]

Thanks for your reply 6161. My gp surgery isn't one I want to deal with anymore. I cannot find an interested gp there. My renal consultant will be the one I ask. I see him in July. I don't ever have tests for my mycophenalate, i'm on a low dose. The tacrolimus is my major immune suppressant or anti rejection drug as you refer to it. I have bloods to check the levels I take are correct. Your brother has had 5 transplants. That's a wow and a sad thing in one. I'm on my first and have had this one for 8 years now, no complications, a live transplant from a friend. How long did each of your brothers kidneys last for? Yes I do need my Lupus looking at. I'm quite achey at the mo, painful in my back rib area etc and so fatigued.

[Hidden in reply to MandaM]

Shame about GP situation. Can you not try another surgery altogether ? I was bothered by the fact that renal have tried to manage your lupus for 14 years, without suggesting a rheumy on board too. Your bloods may already be accounting for myco, that you have done already. My brother is now, 57 yrs old. He was the first child in this country to have haemo dialysis, (16hrs a day then,) , and first child to have a kidney, (cadaver) transplant. His longest was his last, about 19 years. Sadly , he cannot have any more and has haemo dialysis at home. He has other issues now, so life is hard for him, but he was lucky to have had 5 chances, before. As I said, he does not have lupus, he was born with kidney problems, so don't worry on that score.

I hope you do get your referral from cons in July, and that they sort you out very soon....

Ps, sorry I can't list the life of all his transplants, but they did keep him going from age, 12-47yrs of age.