lupus not diagnosed yet

[Edm174]

Hi I am awaiting appointments for rheumatology and dermatology for Lupus, only steroid cream given by my doctor! I am going away in December would doctor prescribe medication or will I have to wait to be seen by rheumatology and dermatology? Just want to feel ok when I’m away thks Eileen

[RosieA]

My experience is that primary care don't definitively diagnose Lupus - they may suspect it but it is only after referral to rheumatology /dermatology that diagnosis is confirmed and then appropriate treatment started. You could contact the relevant departments and ascertain their waiting times. Otherwise, the only way to expedite this would be through the private sector. Remember though, that this is only my experience and others may offer you more suggestions. I do hope it gets sorted before your trip.

[Edm174 in reply to RosieA]

thank you !! Waiting time is 6 months ! No appointments received as yet ! Think doctors are reluctant to give me any medication! Not even sure what to do regarding travel insurance with being undiagnosed! All new to me !

[PURPLECROCUS3 in reply to RosieA]

I had a GP diagnose Lupus from my "butterfly facial rash " caused by exposure to the sun and another because I had at least 4 of the 11 symptoms of Lupus.My GP recently referred me to Rheumatology re my Lupus(Also have undiagnosed Pagets and Acromegaly) and they refused to see me.I have been battling for years to get diagnoses -how can i get diagnoses when consultants think they know me better than my GP does without knowing my symptoms or seeing me.

[RosieA in reply to PURPLECROCUS3]

I wonder if your GP has done your bloods. Have a check and see if you are ANA positive. It should be on your NHS App. If you are then with your symptoms ask for another referral. You can be ANA negative but this is not so common.

[PURPLECROCUS3 in reply to RosieA]

Am seeing myGP tomorrow cos he wants to discuss why I was refused referrals to rheumatologyand the bone team.I have other issues to raise such as why did he not record in my records last week that I had skin rashes/sores or that he asked me to come in to surgery to discuss the referrals.He has always done so in the past.Blood tests are not always conclusive as sero negative conditions.I have sleep apnoea ,hearing loss ,bone pain and deformities and agoraphobia etc -are conditions that are part of Lupus/Acromegaly and Pagets Disease

[PURPLECROCUS3]

i think your GP can-should -mine has.

[Edm174 in reply to PURPLECROCUS3]

Thank you will definitely make an appointment with him ! I only had one positive Ana test all the other tests were negative??

[Florence91 in reply to Edm174]

Edm174 lupus is notoriously difficult to diagnose. It took me a longtime because GPs often have little idea but the rheumatologist was sure on first visit. However it was 6 months before bloods and symptoms came together! Don't despair, you will get sorted eventually. Try and do things that are good for you in your life - good diet, relaxation and balance of life. Getting overstressed however will only make you feel worse.Just wishing you a speedy appointment and good care.

[PURPLECROCUS3]

Hi EDM174

on saturday i was tidying a room and noticed myhand was bleeding.I had not caught it on anything but it was a few like spots that had bled.By Monday I had them on my arms ,shoulders.legs and head.MyGP prescribed a steroid cream and said see how you are in 2 weeks.He did not diagnose it as a symptom of Lupus just that it was "bacterial".I hope you are successful in getting your appointments.MY Gp made a referral to rheumatology and they abnd the bone team(who have never seen me) refused to see me .My GP had asked me to come in to see him which i did yesterday to explain why they refused me an appointment.All he said was "they must have looked at your scans and blood tests".No mention of my symptoms.I told him it is not about blood tests and you agreed lastyear that my symptoms were those of Lupus,Pagets Disease and Acromegaly and that blood tests for these can be non conclusive -sero negative Lupus,pagets and Acromegaly.Despite him agreeing I have these conditions ,he now wont budge and contradictorily says if blood tests are normal then you dont have them.He is also diosmissing any new or worsening symptoms.

[Edm174 in reply to PURPLECROCUS3]

I rang dermatologist yesterday they said I was on the urgent list since July and shouldn’t be waiting much longer ! I just need some help as I’m off to Australia in December and just worried about the heat !