Looking for help

[Damien1975]

Hi,

I'm talking to my doctor next week and will be asking them to test for Lupus. Can anyone advise me of what I should ask for. I have what might be the malar rash reoccurring for years (but it was diagnosed as sebhorrheic dermatitis, despite not covering the nasolabeal folds and fitting all the signs of a malar rash, I find that a moisturiser from dermaologica helps with it but not all the time), fatigue, aches and pains (amitriptaline helps a bit), hands turn blue/purple in cold (holding a cold drink will hurt), IBS, GERD (on high dose esomaprozole), frequent urination, concentration and memory poor, sores up nose occasionally, mildly elevated liver enzymes on every blood test.

I realise it might not be Lupus but any advice on how to proceed and talk to the Doctor would be appreciated, as well as advice on whether the symptoms I've included would fit with your experiences of Lupus?

Thank you in advance

Damien

[Damien1975]

Should also mention that I've had mildly elevated liver enzymes and creatinine levels for years that the Doctors haven't seen as important.

[whisperit]

Hello Damien,

Is this your regular GP or a rheumatologist you are due to see? You might have seen from the LupusUK leaflet on diagnosis on the home page here that the more specific tests for lupus and related conditions are the ANA and dsDNA blood tests etc. But I haven't heard of GPs that order these tests - I imagine that they are seen as an integral part of specialist diagnosis.

So your goal might be to get a referral to rheumatology?

My advice would be to go with some clarity about what you most need to know - if you are most worrying about it being an auto-immune disease, then say that and make sure you ask, "why do you think this is NOT lupus or an AI disorder? What do you think explains these symptoms?"

Hope it goes well anyway x

[Pepysmum in reply to whisperit]

Hello Damien,

With regard to Whisperit's comments re GP's not doing the tests; my GP did. She asked that a whole raft of blood tests be done specific for autoimmune diseases, as I presented with the rashes including what could be malar on face. Plus lots of other symptoms that were Commensurate for Lupus . I had to ask her though, and she did it because I had a series of chest "infections" that would not respond to antibiotics, but did to prednisolone.

So if you do ask the GP, provided they have tried other resources to solve the problems you're presenting, then it is in everyone's best interest to get the blood work done ahead of the referral.

Good luck, the GP is only one of the hurdles after that comes the rheumatologist!

It is good to have an idea where you would like to be seen after the blood tests show there could be an autoimmune involvement. To save time and fuss should you need a second opinion. This I did through the lupus charity help line.

So I found researching hospitals and clinics specific to Lupus in my case, was beneficial. Both for ease of travel and their history I.e. Being a centre of excellence for Lupus or other autoimmune problem you or your GP may think might be the cause.

I was sent as a referral to my local hospital rheumatology. So when I met the rheumatologist there - she said I did not have Lupus but had sarcoidosis and fibromyalgia ( both of which I was properly diagnoses with twenty years ago and I have ongoing assessments yearly at the Brompton for sarcoidosis) I informed her that these conditions were already diagnosed as per my notes would show. But my experience of sarcoidosis was not the symptoms I am exhibiting now especially the facial rash and other rashes and hair loss etc etc...

She said she would run another set of blood tests.

Her opinion was opposite to her colleague another doctor ( whom I had seen when I was taken to A&E two weeks previously for breathing problems. The hospital also ran more tests - I was kept in for a week) he said that my blood test show I am testing positive for Lupus. I had a pos ANA and other markers.

I was determined then to not mess about any longer. This is not an exercise for professional competitive one upmanship, this is my health.

So I asked my GP to refer me for a second opinion to University College Hospital London where there is a specialist clinic for Lupus - it is classed as a centre of excellence.

The one good thing that you have done is to photograph the rash on your face. I didn't and was told by the lady doctor in rheumatology that as no professional had seen it, it was only my word! The rashes on my scalp,nape and upper chest had all been seen by GPs and that is why with everything taken into account they decided to run the blood tests for autoimmune diseases, specifically Lupus.

I dislike being labelled a hypochondriac or being doubted when I describe a symptom. But you can understand why, it is the few who ruin it for the many.

The symptoms of lupus in particular mimic so many other diseases that it is part of its nature to be obscure and illusive to diagnose. So my lesson is to photograph rashes and log flares in detail. Despite being embarrassed as it appears I am self absorbed! If you don't then your recollections become woolly and any photographic evidence is also invaluable, as rashes often crop up when you can't get an appointment on the days they decide appear.

One last thing Damien, I had raised levels of creatinine kinase and other markers which were flagged up by the Brompton hospital. But the notes and letters were mislaid! I had to chase them myself then the GP did not act on them. My symptoms continued to escalate during that year. Now it seems it might have been lupus as well.

I was aghast during my recent visit to the rheumatologist in the local hospital when she explained to her trainee doctor that she was puttingnotes on the system that all results from the respiratory clinic, rheumatology, GP and the Brompton should be sent to each other in future. It seems that this was not done before and needed to be put as a directive to all the departments!

Don't you think it would have been prudent to ensure this was common practice? Especially as Lupus has so many crossover points that other departments need to be involved just to rule out other diseases. When I was admitted to hospital they tried on many occasions to contact the Brompton for my notes. Sometimes with little success. Even the respiratory team were not talking to the rheumatology team whilst I was an inpatient in the same hospital.

It didn't occur to me to ask if this was being done, as a patient it looks somewhat pushy and like I was questioning their professionalism.

I will ask in future.

Good luck with your appointment Damien and keep records, plan ahead and if you feel uncomfortable with a diagnosis or if you feel you are being ignored then ask for a second opinion and specify , where you would like that to be.

Linda

[Damien1975 in reply to Pepysmum]

Thank you Pepsymum! Completely agree about recollections being "woolly" when talking to the doctor, I've started documenting symptoms (though not a proper diary yet) as I find I forget so many things when I'm with the doctor! Also my primary doctor who missed my glandular fever, hiatus hernia, urethral stricture and testicular cancer (i had to pay to get a scan privately) still acts like I'm a hypochondriac! I'm going to different doctor in the same practice who put me on the amitryptaline which helped, so hopefully she'll listen.

At this point I'm not worried if it does turn out to be Lupus as at least I would have a diagnosis and could manage. I'm just finding it tough at the moment at work (just exhausted and foggy most of the time), and I've two young kids who deserve a lot more attention!

Thanks again and I'll start putting some thought into what I'll do next and who to see (whether the tests are done or not), also I'm not surprised (though disappointed) to hear about your experience of missing notes, I live in Belfast and although I love the NHS (overall it's been very good to me, especially with the cancer treatment) there is not a lot of efficient communication between different departments and disciplines. I'm glad to hear it eventually got sorted for you.

Thanks again Pepsymum

[Damien1975 in reply to whisperit]

Thank you Whisperit, I appreciate the help. Just been having so many vague symptoms for so long that it's starting to get me a bit anxious

[Damien1975 in reply to whisperit]

Sorry Whisperit I should have mentioned before that it's my main GP who I'll be seeing. I have been referred on to General Medicine and the doctor there is keeping an eye on me but I don't know if she has performed am ANA blood test (and I forgot to show her the photo of my rash which wasn't showing at the time). i think she's curious about me due to the symptoms and my dad had sarcoidosis so she's waiting to see how things develop. I'll try not to bother her until after I see the GP and hopefully get the ANA test done.

[whisperit in reply to Damien1975]

Thanks. Good to hear Pepysmum's account too - each of us seems to have differing experiences, especially around diagnosis. I'd echo her comment about the sharing of notes between specialities. Despite all the talk of developing shared record systems, there are still times when this clearly does not work. On one recent occasion I was told I would have to go to my respirologist's secretary's office in person to request that a test result be mailed to my GP, as the email systems did not allow electronic record sharing! That's one of the reasons why I have learned to be very careful to check precisely what the future plan is at the end of any consultation - often including being clear about who is getting the results and how other medics involved will be made aware.x

[Damien1975 in reply to whisperit]

Thanks Whisperit, I'm going to have to get a little bit more decisive as to what I hope the Doctors will do. A couple of tests at this point would at least help to confirm or rule out the possibility of Lupus or not.

Yours and Pepsymum's replies have helped a great deal, especially as I was working myself up a bit. Thanks again

[Pepysmum]

PS Damien,

Re the rash and creams etc.. my facial rash was so like yours. It was very itchy and very sore - like I had stuck my head into a nuclear reactor - well almost🙄 But the calamine lotion I was prescribed hurt like billy-o. I tried lots of creams both very expensive like Sisley and less so like organic and hypoallergenic ones also dermalogica none helped - lots made it worse.

So I used coconut oil ( supermarket organic pot) to clean my face followed by a warm rinse in water. That didn't sooth it too much or get rid of the flakes but it didn't irritate it either.

Then I discovered "Boomsilk by Cindy Joseph " online. it is just so pure has no perfume made from olive oil, beeswax with pollen, propolis, honey, vitamin e and Pupukea ( flower) . It absolutely soothes the redness and soreness and dealt with the flakiness afterwards. It can be used all over your body it is not specific to face.

I have used it on the rash on my neck and upper chest too and it works the same way. I don't believe it cures the problem by any way, but it soothes the redness and calms it down so that when the flare is on it's way down it heals the skin too. I now use it every day flare or not.

It is only available from the states but you can order direct. It is not terribly expensive and lasts for ages.

By the way were you born in 75 ? Hence your 1975 ID? If so the same age as my eldest son but so young to have the blasted nuisance of lupus when you're raising a family. You mentioned your father having sarcoidosis- I believe autoimmune problems run in families. My mother has Parkinson's and there is research now that links this as another manifestation of an autoimmune problem, my middle son had milk allergies as a baby and small child with eczema so too all my 3 boys and the youngest son has reynauds syndrome. My granddaughter has also milk allergy and eczema.

As a parent with an autoimmune problem you are hyper aware of when your kids have problems. it is interesting how loud you can shout when your children need attention or diagnosis yet how muted we are for ourselves!

I wish you all the best Damien. Keep us posted how you get on.

Linda

[Damien1975 in reply to Pepysmum]

Yes I was born just at the end of 1975, thanks again for all the helpful advice. I'll check out the Boomsilk you recommended as the dermaologica is excellent (others irritated it terribly) but you can still feel the warmth of an irritation at times.

Totally agree about how much easier it is to fight for your partner or children, when it comes to me I find myself just nodding along and only realising after I've left the doctors that I've been given a variation on "lets wait and see".

As for it running in families, it's definitely from my dad's side! As you know he had sarcoidosis, and my Granny had a host of complaints that were never diagnosed but I suspect may have been autoimmune related.

Thanks for all the good wishes and whatever the result of the tests I'll come back to let you know even if it's not Lupus.

Damien