Help needed..

[Lee1305]

HELP. 7 years ago I was on holiday in Egypt. Usually I reacted ok to the sun. This instance I got sun burn and when arriving back in the UK I had red raised rashes all over my face and neck. I went to see my GP and he referred me to dermatologist. They perform several tests and diagnosed me with lupus. There was never a treatment plan set up. I was then passed from pillar to post every time I had a flare up. Too be honest the rashes has never really disappeared in the last 7 years. ive been on various medications with no success. I suffer from rashes, fatigue, hair loss, weight loss, aching joints and bones, night sweats. They only seem interested when I have a major flare up. I'm so frustrated. My blood results show negative for lupus but I'm being told this could be the case sometime on rare occasions, is this true?? That's if they are doing the correct blood tests as previously they haven't. I have my next appointment with dermatologist on 23th may which they are saying is the quickest appointment!! Do you think this is acceptable? What can I do? 

[Barnclown]

Hello lee, and welcome

Reading your post fills me with dismay.  Sadly, there are quite a few who are handled the way you have been.  You deserve continuity of care + an effective treatment plan + active monitoring

Are you living in the uk?

I'm sure you'll get great replies, but, for now, maybe this link to a recent discussion here on forum will help you...the discussion is about sero neg lupus;

healthunlocked.com/lupusuk/...

Wishing you all the very best

Hope you'll let us know how you get on

🍀🍀 coco

[Lee1305 in reply to Barnclown]

Yes I'm in the UK. I'm in Lincolnshire, there doesn't seem to be the knowledge for lupus in the area. 

Thanks for the link. 

[Barnclown in reply to Lee1305]

I wonder if your GP practice would refer you to addenbrookes in cambridge: there is a great Lupus & Vasculitis Clinic there which is helping me hugely... I live in Suffolk so I had to firmly request my GP practice refer me out of area...which went v smoothly despite initial GP reluctance

[littleeffie in reply to Barnclown]

Hi coco,

It was just that comment of Lee's saying he was told on "rare occasions " it can be lupus with sero neg results.After my sharp reminder that Lupus is very rare in itself so as we all know medics having limited understanding of it why do they get so shirty about sero neg lupus ? When you have a rare condition presented to you why be suprised at a rare % of sufferers not showing positive results?They are so quick to state they cant give answers about lupus as rare and not well researched but so darned sure and knowledgeable you cant have lupus despite showing all symptoms due to negative blood results.Is there a Lupus diagnosis criteria book for doctors that most only read the first page on blood tests and results?

Sorry it makes me soooooo angry and upset for people having to struggle and suffer through others lack of knowledge,incompetence or just bad practice.

Oh dear I must be getting better my soapbox has been out twice this week!

Effie x

[Barnclown in reply to littleeffie]

Well put Effie 🌟🌟🌟🌟🌟👍👍👍👍👍👏👏👏👏👏

[babssara in reply to littleeffie]

HEAR, HEAR Effie.  Go girl

x

[kittykat68 in reply to littleeffie]

I totally agreex

[Terrier_Lady]

Hi Lee, 

So sorry to hear about your treatment experience. I'm not in the UK but in the US. I know our health system is a bit different but diagnosis should be the same. Yes it is possible to have lupus without it showing positive in your labs. I'm sure they are talking about a positive ANA. Which means you test positive for anti biodies. Some doctors think that if you don't test positive for this then there is no way it's lupus. But if you actually read the lupus foundation website there are about 5% of us that don't have a positive ANA and still have lupus. There isn't one test for lupus. Diagnosing it is a combination of blood work and symptoms put together. I am one of the few that doesn't fit into the lupus blood work catagory. I had symptoms for years with abnormal blood work, which was believed to be from a blood abnormality that I have. Then when things started getting really bad they didn't know what to do with me because the ANA wasn't positive but I showed inflammation in my lab work additionally to the other abnormalities. Since the ANA wasn't positive it took quite some time for them to think of lupus. Once they suspect you have it you really should be seein a rheumatologist for your treatment plan. They are the ones that oversee auto immune diseases. It took me 3 tries before I got a rheumatologist that was able to help me. They all agreed on lupus but the first two weren't treating me agressivly enough to stop the disease progression. So by the time I got the wonderful rheumy I have now my lupus had progressed to the point that I was no longer able to work or function properly in life. Now I undergo treatment, but it's so severe that all the treatment and meds are just kind of keeping things stabilized but the amount of damage that has been done has left me unfunctional. My rheumy calls what went on before him a bunch of ridiculousness and he said it's because my labs don't fit as text book lupus so they didn't treat me properly and thus we are where we are at today. So I'm telling you all this because yes you can have lupus without a positive ANA and it can be quite severe. You should definitely be receiving treatment. The sooner you get on a treatment plan the better, you want to stop disease progression. So please try to find a good rheumy who will treat you based off your symptoms and not just labs, if the first specialist you see isn't helpful don't give up. Lupus is a difficult disease to diagnose and treat as there are so many symptoms and each persons case is different. I hope this info is of some help to you and I hope you find proper treatment soon. 

[Paul_Howard Partner LUPUS UK]

Hi Lee1305,

I'm sorry to hear that despite a previous diagnosis of lupus you have not received any ongoing treatment. Have you ever seen a rheumatologist? If you haven't, it may be worth pushing for a referral as they will generally have more experience in treating lupus. You may wish to ask for a referral to somebody who specialises in lupus. Depending on where you are in lincolnshire this is likely to either be the lupus clinic run by Dr Hall at Addenbrooke's in Cambridge or Dr Peter Lanyon at the Queens Medical Centre in Nottingham.

If you feel that you need to be seen sooner by your dermatologist then you could try phoning their secretary and seeing if there have been any cancellations so that they can fit you in sooner.

We have a booklet about skin involvement in lupus which you may find helpful. You can view and download it from our website at lupusuk.org.uk/wp-content/u...

In addition, if you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Lee1305]

Well after some thought I decided to go private. Just got back from Leeds ( spire private hospital ) I've seen a dermatologist who has a speciality in lupus. After some time reading through my referral notes and symptoms he has come to the conclusion I have lupus. He stated that I looked like I was going though a major flare up and this needed to be treated Asap. He has started me on a very high dose of steroids ( 6 per day for 2 weeks then reduced by 1 per day until week 7. I've never had this treatment before and the flare ups have been the same when I've seen local dermatologists. He has put my mind and ease and finally I can see something positive. As I've had this for 7 years with out the correct treatment he is going to push for me to have all my treatment and check ups at castle Allerton in Leeds under his care. I have an appointment in 4 weeks to have a another biopsy and more blood test and to see what the next steps are. 

[kittykat68]

Ahh Lee I'm sorry to hear that u had to go private ,but on the upside ur dermy sounds like they know wot they are doing,I had 5 biopsys and that's how my suba cutaneous was diagnosed and I have 2 positive anti Ana's and 1 negative but was in a constant flare light u,that was 2010 I'm now under control with my skin but still have painkeep us posted

[kittykat68 in reply to kittykat68]

Sorry I forgot to ask did they give u any anti malarias

[Lee1305]

He gave me prednisolone steroids. I also have dermovate for my neck and emoumvate for my face  I'm just concerned my skin will get really thin with all this steroid base cream! It's already very thin and scared after 7 years. I'm considering cosmetic makeup. Any ideas? Heard skin camouflage is good? 

[kittykat68]

No mine didn't scar lucky enough,discoid lupus scars,do u use oilatum,that good for keeping ur skin moist less cracking,that's strange that they didn't start u on antimalarials,be careful when u go out in the sun, my dermy gives me 50 factor sun sence sunscreen and I'm olivey skin I'd never burnt in my life ,until steroid cream thinned my skin