[elainepink]

I have been diagnosed with SLE since June - the undiagnosed because the sun did not flare my symptoms on a recent holidays - despite staying in the shade, wearing factor 30, and 10mg of corticosteroid for the entire 2 weeks! I came off the steroids when i got back and 2 weeks later low and behold, my voice is very weak and nearly gone, hands are very sore - driving and typing are both painful, legs, hands and feet are very swollen and i just feel so lethargic constantly.
For the first time in years my white blood cells are normal at 5.6 and am awaiting for other results which are repeat tests - previously was weak ANA positive, history of low white blood cells, low platelets, abdominal pain despite having a choleocystectomy.
I am back on 30mg of steroids per day, 40mg of dieuritics and pain killers and am really really fed up. All these test liver - kidney etc normal but why do i feel so awful, sick and bloated.
I am not a headcase as has been suggested - these symptoms are visible and i am just fed up
Any advice?
Hugs as i know there is someone worse than i am...
x elaine

 

[LolaLola]

Dear Elaine, Of course you are not a headcase. Lupus can be very variable and even your response to sun can vary. (I am universally bad in the sun sadly)
It sounds as if you have really struggled. Are you quite well informed about Lupus? I know several people who have been diagnosed and then had their diagnosis taken away. That must be a very undermining thing to have happen.
Bloods most certainly do not tell the full story. Mine were negative for years even though I was very ill. Fortunately I found Dr. D'Cruz in London and he started treating me before the bloods ever changed.
x Lola

 

[Joandublin]

Oh dear :wall:

Thats just hard to believe Elaine :worried: I wonder does your Rheumy even know that not everyone with Lupus is sun sensitive? Clearly not.... Also I wonder can he explain your anti dsdna antibodies? Maybe you could ask him why they are there?

I know your choices are probably limited where you are but it would be worth talking to your GP about your concerns at this stage. Perhaps there is another Rheumatologist or hospital near enough to you that you could go to?

I know there have been a handful of Irish members here who had to eventually go to St. Thomas in London to get a diagnosis and begin treatment. It is a bit of a drastic step but it might be something worth considering if you cant get anyone else or your Rheumy continues to dither and give you wrong information.

Many hugs Elaine. I wish I could offer more.
Joan:rose:

 

[Clare.T]

Hello Elaine

You aren't mad but your rheumy definitely is some sort of mad. Apart from the sun business, which shows profound ignorance, what is he doing bunging you up with Prednisone and not prescribing any disease modifying meds.

If it's agreed that an autoimmune connective tissue disease is the cause of your symptoms then you should be on appropriate medicine to reduce disease activity and reduce the need for Pred to the minimum.

See my signature !

Cheers
Clare

 

[elainepink]

Sound advice

Hello all and thank you so much for your sound advice.
I am seriously considering a trip to london to be honest to obtain A) a proper diagnosis and B) some form of treatment. I am to contact my rheumy on tuesday and this is his last chance to be honest. If i dont get proper treatment then i am off. Trouble is i have been poked and prodded and undergone every type of test known to man in the past few years and i dont fancy the thoughts of that again with someone new - i dont even know where to begin with getting a referral to london!
I am so frustrated and sick to death of steroids, the fact that i am on them is really getting me down to be honest - i just want to feel well again! I went to boxercise tonight to exercise to try reduce side effects of the steroids ie the muscle wasting and bone density which is supposed to be reduced by exercise but i could not even make a fist with my right hand! I cant walk on the roads as my hips give out, cant do exercise on a stability ball as it presses on my tummy resulting in endless hours of pain.... Argh what do i do! I am damned if i do and damned if i dont!
It is one year ago today since i had my thyroid removed and i honestly thought that was the end to my worries.....how wrong i was. My thyroid levels are now fine with medication... yet i have still managed to put up nearly 2 stone in the year - i am trying to be bright and sunny and let the world see a happy me but it is difficult to be honest. And it certainly doesnt help getting the run around from the medical establishment - i am a great believer in the Nike logo "Just do it" but i dont know how....
Hugs
e

 

[LolaLola]

Dear Elaine, There are others here who have come to London from Ireland. I am sure they will help you. Also the London Lupus Centre office staff are very good and will answer any questions you may have.

I know you are fed up with being poked at but believe me the london Doctors will know that. they see people all the time who have been let down by the medical system. I had to have my first three appts. privately with Dr. D'Cruz and it was so worth it, I was helped straight away. I know you are despondent but at least you do still have an option open to you.
x Lola

 

[Jesse88]

I'm also wondering why you're not on something to suppress your overactive immune system. My understanding is you don't have to have all the "right" numbers to be considered positive for lupus. And I don't have any problems with the sun, although I do wear sun block and a hat if I'll be out for more than a short time. Even so, I've been heavily exposed when I couldn't get out of the sun, and had no problem. Still, I have lupus. No my friend, you are not mad. You are just not being treated properly.

 

[elainepink]

Thank you all for your help and advice and the confirmation that i am not barking mad.
I have decided to take hold of the reigns and have decided to investigate St Thomas hospital. Does anyone know do i need a referral and if so is my GP sufficient as i would say i will be here forever if i am looking one from my rheumy. The waiting list for consultants here is months, what is it like for St. Thomas hospital consultants? Also finance - what is the story for irish referrals?
Sorry for all the questions but i am determined to get to the bottom of all this.
Thank you for all of your help
x e

 

[Joandublin]

Hi again Elaine

You can pick up the phone and give them a call. Tell them you are unhappy about the treatment you are currently receiving here in Ireland and would like to enquire if they would offer you a consultation via a referral from your GP.

http://www.guysandstthomas.nhs.uk/services/ambulatory/specialistmedicine/lupus/lupus.aspx

There is a member here who has been over there on two occasions. I had some exchanges with her about the process and Im sure she wont mind me telling you that she made direct contact with them (being unhappy with her treatment in Ireland) and got an appointment with a referral letter from her GP which she brought with her on the day. She also got her hospital to send across blood test results before the appointment.

Other than that I really dont know too much about a referral from overseas. I think her consultation was less than £200 and she is welcome to go back anytime but was hoping that her Irish Rheumy would follow up the treatment. This was her second time to go to St. Thomas because of poor treatment here and her Irish Rheumy was none too happy the first time, saying 'they could take no responsibility if anything went wrong, etc etc etc'.

St. Thomas's wrote to her GP after the consultation and sent instructions on prescriptions.

If you have a supportive GP and a strong stomach for the 'tut, tut bold girl' type of comments you will get from the Rheumy here...then go for it!

It will do no harm to make your enquiries anyway.....

I dont know the current waiting times but Im sure a call to them will let you know fairly quickly.

Luv n stuff
Joan:rose:

 

[elainepink]

hi joan
Thank u so much. I will give them a call on monday or tomorrow if i get a chance. To be honest i am even doubting if i have lupus - my gp says all symptoms add up and he wishes the rheumy would just get off the fence.
As for strong will in the face of scorn.... after 3 years of bouncing fromone consultat to another iam developing a thick skin.
Due to call rheumy on tuesday about latest flare... will wait for his reaction.
I will let you know how i get on...
Hope you are well....
x e

 

[onetay]

Your not a head case, it is different for most and can say I relate to you and the sun(even in the shade). As I have said before we are teaching the doctors and they like to keep a eye on most of us. Best advice go to a 50 sunscreen but didn't work for me. Try and stay on the meds and plan things for the evenings. Take little naps when you can and keep smiling( didn't want to be all -). Good luck
onetay