[gingertoni]

Hi
I am not diagnosed but would like a firm diagnoses.
I know I have Lupus, and most of the time it is mild, have a a few severe flares in the last 10 years one being when pregnant with my son at which time I was told by piediatricians when my son was born I have Lupus.
My son was born with Neonatal Lupus and heart block, had his first pacemaker fitted at 5 days old (now a 4 year old starting school full-time in september and not a care in the world).
It was then I realised my mother had SLE, she had protected from it pretty much.
I have had so many symptons over time and keep a log, (not with dates but general details), I have never had a positive ANA etc test result, although my son is testament that I have had a some point, (this is what caused his condition).

I haven't been to St Thomas's since May last year, since I was started on Predisolone, (life changing for me I now have a reasonable 'normal' life and am at the end of a very intensive teacher training course). I was told at my last appointment that although I had symptons without a positive blood result, they would not put a label on it, and felt as though they almost accused me of making things up. (I did not have anyone with me at my last appointment, but my husband is going with me tomorrow, to speak at the points I normally wish I had said something when I get home).

I have looked at the alternative criteria list, and will go well armed as I 'tick' lots of boxes on there, (there is only a few I don't!) I know that blood results are not crucial, my mother gets negative results even during flares and she has severe lupus and rashes.
After 4 1/2 years I feel like sitting there and refusing to leave until they diagnose me or take things seriously.

I feel I am following the same pattern of lupus as my mother, it worsening in middle age (40-50ish at menapause), as I am 40 next year and feel the clock ticking.
On a plus side if you can call it that, the combination of the appointment, essay writing and the end of my course looming (I am working so hard to pass), I am exhibiting very obvious flare symptons. (hair loss, sore scalp, temporary rash on face - although it last short spurts, joint pains stiffness, concentration and memory problems, tiredness)

Can anyone give advice on the best way to go about my appointment other than a sit in!

Thanks in advance, sorry for the long post (years of frustration).

 

[Beanbag]

Hi Toni,

I can appreciate how you feel as for may years my rheume was unsure if I had Lupus or not and I also got the impression that everyone thought I was making everything up-I even started to believe myself that my symptoms were all in my head. Eventually I was referred to St Thomas's where more test were carried out. In January this year I was finally diagnosed with Mixed Connective Tissue Disease (MCTD) with SLE and was so relieved that I wasn't going mad.
My best advice would be to listen to the DR and if they say that your tests are negative to Lupus then ask them what else it could be. Another condition that gives similar symptoms - from what I understand - is ME. My rheume told me that if my ANA had not been abnormal then he would have diagnosed me with ME as the symptoms are very similar to SLE but without the blood results of SLE. Not sure if you have considered that area or not? Also, taking someone else with you for support is a good idea as they can often help asking questions and may hear/remember things that you don't.

Hope this helps

Beanbag:lol:

I am still in recovery from an acute flare and am having to try and adjust my lifestyle, which is not easy and I am hating having to ask for help and walk with a stick.

 

[gingertoni]

Thanks Beanbag,
hopefully I will get somewhere tomorrow, I have now got an extensive list of my symptons, and having hubbie will help.
I have considered it isn't lupus but the facts and symptons stack up, and it makes sense of my life, the bouts of not being able to do anything, and the poor teenage life I had due to poor health.

 

[Clare.T]

Hello Toni

Well you certainly had the anti Ro bodies at some point because that's what's caused your son's neonatal lupus as you know. I am glad he is doing so well now that's good to hear.
For me the main issue would be getting suitable treatment as you don't want to be on Pred any more or longer than necessary. Maybe the bloods will show something up this time and maybe you will get a different doctor. Of those who have negative ANA, half have Ro positive SLE.
Even if you are very stressed right now the severity of your reaction and symptoms suggests lupus not stress alone and it is agreed these days that lupus is worsened by stress.
The fact that the Prednisone has proved useful might be taken to indicate an inflammatory disorder.

I seem to remember that the Plaquenil didn't suit you but can't remember if Mepacrine was ever tried. If that's not suitable either then presumably Imuran or maybe Methotrexate would be the next treatment option. Sometimes they will try the Plaquenil again using a very slow desensitisation programme or so I have read.

It's great that hubby is going with you- it is much easier for them to stay calmer and reinforce the need for them to come off whatever fence this doctor has been sitting on. Stick to your guns, being calmly assertive and best British ****** minded - why exactly won't they diagnose and more important, treat you - whatever they want to lable it. I agree that with your history and your mum's SLE an autoimmune connective tissue disease is a very strong possibility. Of course there may be other disease elements such as thyroid disease or anemia on top of the CTD.

You want the best quality life possible for yourself and your family
I expect there'll be a follow up after the test results get back.

Lots of luck this time

Hugs
Clare

 

[gingertoni]

Thank you it is nice for someone to confirm the same about my son, it is my biggest evidence no matter what. I agree about the predislone I have already put on at least 1-2 stones (don't want to get on the scales recently). So a better long term answer would be better. I did come out in a reaction to plaquenil but didn't try anything else something I should discuss tomorrow.
(I have been taking the predisiline for nearly a year with no real reviews which is a worry, other than me requesting to up the dose.)
Follow up appointments still don't seem very often at St Thomas's (mine was a next available and I still waited 11 months), but I have the summer holiday free (the joys of now finally being a teacher, once I pass my essay anyway).
Once again thank you.

 

[LolaLola]

Dear Toni,
My Daughter is only positive for APS bloods but has been diagnosed by Dr. D' Cruz. She last saw a very nice lady called Dr. Shah who was really good with her and not at all hung up on blood results. I also did not have positive bloods for a long time. I wish you a good appointment.
If you are really worried have a word with Kay, the Clinic Nurse when you get there, she may be able to slot you in with someone who does not emphasise the bloods too much. As you say appointments are rare so you really do have to make it count, and I have told them so before, so don't be afraid to stick up for yourself. Kay is nice and will do her best.
x Lola

 

[sarah-pearson]

Hi Toni, Good luck for tomorrow x

 

[madwife]

Hi Toni,

Try to write down a tick list of everything that you want to say/ask at your appointment. That way, hopefully you wont miss anything out. If you have any photos of your facial rash take those aswell (fantastic piece of advice received from this site!).

Hope all goes well for you.

Madwife

 

[Joandublin]

Best of luck tomorrow Toni. I hope it goes well for you and I can understand how nervous you feel about it.

Let us know how it goes. Take deep breaths and resolve to come away satisfied that you were listened to.

Take good care
Joan:rose:

 

[Clare.T]

Hi again Toni
It's probably a bit late now but maybe it could help someone else. Primary Sjogren's criteria ( Sjogren's alone) do not require anti la or anti Ro antibodies to be present, if there is a certain mix of both subjective and objective symptoms.
See for example

http://en.wikipedia.org/wiki/Sjögren's_syndrome

You will know if the subjective criteria are present and anyway St Thomas' always does the Shirmer test and counts that as an 'alternative' criterion for a lupus diagnosis. I had never even thought my eyes were dry before but they were 'bone' dry on Shirmer's.
(I have long diagnosed subacute cutaneous with very 'mild' SLE and the anti Ro's so the Shirmers was only an interesting novelty to me)



Clare

 

[lazylegs]

Hi Toni,

Just want to wish you luck with your appointment. Going to the doctor is always a little stressful but even more so in your situation. Hopefully your husband's presence will help.

Take care,
Lazylegs

 

[acard]

Toni,
Hope all went wellPlease let us know all that you found out. I know you are in good care, so that must feel good.

I am so glad to hear that your son is doing well


Hugs,
Becca

 

[Lily]

Hi Toni,

I too hope things went well. There were some good points made about some other things that may help you in your quest for a firm diagnosis, especially taking photos of the rash and also having the Shirmers' test done.

If you are still taking Prednisone (and by the sound of it you are) then it may very well mask any positive bloods done now - but surely they will realise that and not place too much importance on any results.

love
Lily

 

[gingertoni]

Thank you for your support.

I think it went well yesterday. I ahve been perscribed Mepochrine as well as the predisolone to see if it helps and will have chest x-ray and lung function test locally, (but wont be suprised if these wont show anything), even when I had my last bout of pleurisy the x-rays came back clear.
Dr Cuadrado said she was 95% sure it was Lupus partly because of my family history and my son, but thought 'unusual' I didn't have positive anti ro etc. She also acknowldege as well that I must ahve at some point had a positive to cause my sons condition.
She said that the fact the bloods dont come back positive might be through the lab tests just not picking it up as it is a very mild positive or that for me they are not sensitive enough and something in the test just misses it, which I have been told before. It does beg the question if they know the tests might not give proper results all the time, (but I guess they are accurate in most cases), why do they give them so much emphasis?
But as my Husband asked the treatment I would be getting would be the same with a firm diagnosis and to me this is as good as. I feel like I have got somewhere I guess a virtually firm diagnoses is better than none.


I the main reason I want a firm diagnoses is for occupational health etc.
I start a new job in September and if/when I start having health problems I would get more support etc with the diagnoses. Teaching is a hard profession with very long hours and even though I will be working part-time most of the pressures will be still there on top of looking after my family.

We made the most of being in London and the kids staying at their Nan's for a few days, and went to the Bluebird in South Kensington, and had a very nice lunch, calmer once it was all over.

 

[LolaLola]

Dear Toni,
So glad it went well. Mepacrine is a good medication.
If you need to get it locally Boots are the sole manufacturer and even then may have to get it in specially, so it pays to put Repeat prescription request in early.
THanks for letting us know how it went. Sounds good.
x Lola

 

[gingertoni]

Thanks that is really helpful, I was told by the hospital could only get it from them, I will certainly give it a try.

 

[Katharine]

Hi there,

I'm glad to hear that your appointment went well. Hopefully now you'll be able to build up a good relatonship with your rheumy and feel more at ease.

With reference to Lily's comment about pred - my rheumy also says that the pred I'm taking would mask many things that might come up in the bloods. She mentioned this when I had my recent breathing problems etc. as, by the time I saw her, a month later my bloods weren't too bad.

Hope the mepacrine makes a big difference,
Katharine

 

[Clare.T]

This is good news Toni as far as it goes and I am glad you are a bit happier with the situation.

My GP won't prescribe Mepacrine because it is not on the list of licensed meds so I get mine from the hospital pharmacy, 3 months worth at a time on the consultant's prescription. I get it filled when I am there then ask for the renewal a month ahead of time. They send refills to me which has worked just fine and they have been very efficient, until a pre Christmas lot never got delivered and it took me an incredible 3 months to get a new prescription, meaning two months without.

Dr Cuadrado seems to be more of a stickler on the blood work than the others and more cautious to diagnose, from what I have gathered, perhaps a mistaken impression

I suggest you write to her explaining the work place interest in having a diagnosis of some sort- maybe she would agree to say " connective tissue disease " You know far better than me of course but I must say I have read many stories here where employers haven't been the least bit impressed by a firm diagnosis of lupus. Maybe if you had MS or AIDs or some well known disease even RA it would be different but lupus has a very low profile despite being more common in fact. You would have to weigh this against the definite disadvantages for insurance.

Many congratulations on all you have achieved ! I hope you have a happy and fulfilled career

Bye for now
Clare

 

[julsie]

Hi Clare,
They didn't give me a Shirmer test when I went to St.Thomas's,so I am a bit annoyed about that!
Julsie

 

[Clare.T]

I don't know what to make of that Julsie. It is a St Thomas' 'thing' as it is one of the Alternative Criteria. Several other specialists mention it too as a useful guideline and often as part of a lupus work-up which will often include tests not directly related to lupus, more with various other autoimmune connective tissue diseases for differential diagnosis or overlaps. I guess it all depends on the doctor.

I hope you get some answers soon
Clare