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SAM M
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Discussion Starter · #1 ·
Hi all so confused ! and its taken me ages trying to work out which was the best place to post this !Sorry moderators if ive chosen the wrong one and you have to move me !:blush:

Had 2nd rhuemy appointment last week and i havent got a clue where i am now he said because i have no organ damage it probably isnt lupus unless it just hasnt affect my organs yet :eek:! I have a undifferentiated mixed connective tissue disease / lupus ? sorta diagnosis ! Rhuemy has reffered me to a dermatologist regarding my rashes and said he,d better keep me on the books and will see me agin in 6 months ! I just feel confused and kinda abandoned if that makes any sense !?! Any similar experiences or any advice from anyone would be very much appreciated !::sad:

Thanks all
Sam M X
 

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Hi Sam, sorry you are so confused. The diagnosis you have been given is common. More importantly what treatment have you been offered? Are you going to be monitored during the 6 months till you see him again?

The dermy should be useful and I would take photos of any rashes to show them in case they are not there when you have your appt.

It can be a lot to take in at first, give yourself time to adjust.

Take care

Deb x
 

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I have had a similar dx experiance....although finally in Nov 2008 my rheumy decided to call "it" Lupus. But I notice when i see her even now she says things like "the type of connective tissue disorder you have...." so ????
But I have allot and probably enough of the Lupus symptoms to make it quite alright to us the looks like a duck theory....
I had one rheumy at a very large city hospital tell me "I would like to tell you you have Lupus...but I can't because it's bigger than that" and then a second opinion in another large city that said " it doesn't matter what you call it because they are all the same and are treated the same"
So I guess what my advice would be is try and drop the confusion baggage it weighs heavy, accept the maybe not knowing all the answers and kust enjoy life, and treat or deal with the multitude of annoying symptoms and watch out and take seriously and be quick to treat what you feel is more serious with the help of your dr. letting things go and the wait and see approach is someitmes not such a good thing.
take care Sandra
 

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Hiya.. yep it can be a confusing road to travel for both us and the docs... I have MCTD a mix of lupus, scleroderma, raynauds, hypothyroidism.. etc etc it is treated as you would lupus, though no organ involvement... yet! I have been told it will either stay the same, progress to Lupus.. or to scleroderma but only time will tell; great, can't know what the future holds, but actually the treatments are the same and boy do I hurt, fatigue etc and flare so we are all pretty similar whilst being different... confused??? the medics usually are!!:lol: I wish you well on your individual path.
Claire X
 

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Hi,

Sandra's Rheumy said it all really:

" it doesn't matter what you call it because they are all the same and are treated the same"
The main thing is treatment............has he started you on any?

love
Lily
 

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SAM M
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42 Posts
Discussion Starter · #6 ·
Thanks

Thanks all for your replies :). I was started on Plaquenil in May but had some serious side affects so was told to stop ! So not on any medication at present ! If i need anything i have to go and see my GP ! I will keep you all posted and thanks again for your feedback :wink2:

Sam xxx
 

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Hi Sam,

There is another anti-malarial called Quinacrine (Mepacrine) which you might be able to take............some here were unable to take Plaquenil and have done well on it. It needs a prescription and has to be made up i.e. compounded but it's really worth exploring. Without anything to control the disease process it may well progress. Better to get control over it now.

love
Lily
 

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SAM M
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42 Posts
Discussion Starter · #8 ·
Lily

Thanks for your reply ! What are the benefits of the anti malairials ? I remeber reading that it was used to help the morning stiffness & sunlight sensitivity does it help with other symptoms ? x
 

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Hiya Sam,

Maybe wrong but I was told that the antimalarials have disease modifying effects...so hopefully slow/stop the disease getting worse.
 

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Hi,

Lesley is right about their ability to control the disease process itself. They change the acid base of the cells and that makes it harder for us to make antibodies - the nasties that cause our bodies to attack itself ;)

Their most obvious effects apart from that are they help with joints, rashes and go some way to helping the fatigue. If you get pleuritis etc then after some time they seemed to help me with that also. They also have a nice side benefit of lowering cholesterol.

love
Lily
 
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