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Where to from here?

627 Views 7 Replies 6 Participants Last post by  onetay
Hi all,

I have been diagnosed with SLE since Dec 2008. I have no idea as to where I should begin or what to do! I lost my son in 2007 to CF and this has been the cherry on the cake. I am confused and scared and my face looks likes an elephant's skin! The discoid lupus has taken over my life as the SLE has ruined my chances for a happy healthy life! Oh wel, guess it doesn't help crying over spilt milk....... :(
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Life can be so hard.

Hello Liana, I just wanted to reach out and send you a hug. Life seems to be a never ending series of problems and agonies at times. :sad: I lost my son years ago to SIDS but the missing of him stays, as you will know. It seems as if you have had mountains to climb in your life and for that I send you some strength X
I hope you have access to good medical care and advice, I don't know much about discoid lupus, I am quite new to the site and diagnosis.. last year, but I would urge you to speak to a good Rheumatologist who will probably refer you to a dermatologist... I am sure people on this site will identify with you and send in some good advice/tips. It is natural to be confused and scared, but by getting some help and info you will feel less out of control of your body. I am sorry I can't help you more, please take care, I will be thinking of you.

Lots of hugs..XClaire
Hello Liana and welcome,

I too would like to add a big hug :hug:

I'm so sorry for the loss of your son and what you are going through now as well.

It does very much sound as if your disease activity might not yet be adequately controlled. However, it is important to remember that you are very early on in your treatment and that things should improve immensely with good treatment. I presume that you ARE being treated and that you have found a specialist rheumatologist and dermatologist?

If you have any questions, don't hesitate, there's a wealth of experience on these boards. I, myself, have very little experience of discoid so just wanted to generally welcome you :)

bye for now,
Thanks for the hugs - it helps alot!!!

I am seeing a dermotologist and a nephrologist but thats it. You are right, I have alot of treatment and trials to go through before I can say that I am being treated! I am sure things will improve - I just have to hang in there!!! Thanks again...... ;)

Hi again Liana, You should definitely go and see a Consultant Rheumatologist with a diagnosis of SLE and Discoid Lupus. I wonder who diagnosed you????
The Rheumys specialise in auto immune disease and they are.. (if they are good) up to speed on latest medicines, advice etc for the variety of aspects that are Lupus. Please go see a Rheumy, but try and find one that is recommended as there are some dodgy ones around!! :rotfl: I was diagnosed the month before you following months of pain... it is very much trial and error for me at the moment too. I am on plaquenil (first line of treatment often), and coming down from prednisolone.. on 5/7.5mgs alternate days.. I ache today though!! Also taking Vit D, Losartan (protect kidneys/heart), amitriptyline.. tiny dose for sleeping, thyroxine, and my own concoctions, flax seed oil etc etc etc. I have been to reiki, which helped, homeopathy, which I am still assessing, reflexology,, just for relax and tried massage, perhaps thats why I ache! This is a journey where we aim for good health and quality of life... we will be plodding through in different countries but same aim :)
Go get yourself that appointment.
Take care and lotsa hugs...Claire
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Hello Liana,

Of course you feel overwhelmed at the moment. Losing your Son was more than enough to cope with without this. The good news is that you can very quickly learn how best to help your Lupus and get the best from your Doctors. We all needed help initially, and we are here to save you having to re-invent the wheel.

I am not very knowledgable about Lupus, but I do know that a drug called mepacrine (Quinacrine) can be very helpful in clearing skin. Maybe it would be worth you enquiring.

Meanwhile, a big Welcome to you. Post here as often as you would like and maybe try the Chat Room.
x Lola
HI Liana,

Welcome to the site and I am sorry to hear your story. A double whammy. poor you. the ladies are right. You need a rheumatologist. I am in pietermaritzburg so my Durban based one isn't much use, but there are good ones in Joburg too.

Good luck and I hope you feel better, even if your heart doesn't.

Hi and it seems that you are still having a hard time. I am sorry about your son and about your having lupus. You can have a happy life you just need to adjust your thinking a little. Lupus is not a death sentence any more if treated. You must listen to your body and your doctors. I know things look bad but try finding things that work for you and then share that information with others like you. Your dermy should be able to help with the elephant look (sorry your words not mine). I am sure you are as beautiful as the day you were born. Try to let go of some of the stress in your life as that will help with some of the symptoms (not all but some). If you are able to I would try seeing a chiro they can work on getting your body to feel a little better and sometimes that is all it takes to look better too. I would ask the doctor if they think an anti-depressant might help level out your emotions so you can think without the fog or rollercoaster of emotions that I am sure flood your everyday life. I am not sure any of this has helped you at all but I can only hope at least one thing made you feel a little better. I hope you feel better soon and you are always welcome to join me in the chat room.
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