[doris999]

I just want to know, what tests to ask the rhemie to possible do, to help find out if i have SLE or not, or even find out what is wrong with me whether i have SLE or not, i know there is something really wrong with me, WHAT no one seems to know or care for that matter.

 

[lazylegs]

Hi Doris,

Sorry to hear you have been feeling so unwell :hugs:. Don't give up trying to find out the cause. There is no need for you to be suffering so. If your doctor isn't listening to you get a second opinion.

There is no one test that says "yes you have Lupus". It will be a combination of factors that would rule Lupus in or out. Have you checked out the Lupus criteria?

http://www.uklupus.co.uk/dxlupus.html

My doctor began with the ANA. When that was positive further testing was done. The recommend blood tests are:

http://www.uklupus.co.uk/tests.html

Take care,
Lazylegs

 

[Lily]

Hi Doris,

Did you mention in another post that you had a biopsy done or was I misunderstanding it?

It's possible some of your symptoms are from Sjogren's as one of your docs mentioned. They can test your Anti La/SSB for that and if positive even without a positive ANA they should be treating your symptoms. You see not all people with Sjogrens have a positive ANA, something like 20% don't. But there are other diagnostic tests some done by an Opthamologist and also a lip biopsy.

Likewise with those people who have SCLE (sub acute cutaneous lupus) a form of Lupus, it can be tested for by doing a Anti Ro/SSA. Not everyone will have a positive ANA. People with this antibody are very photosensitive as a rule and it can involve joints/muscles, in some cases pleuritis, and mild kidney problems, amongst other things. It usually lacks the serious organ involvement sometimes seen in SLE though. However it is treated the same as SLE depending on the severity of the symptoms.

I'm sorry you had problems taking Plaquenil. I wonder what your starting dose was? It's best to start it slow at 200mg daily then gradually work up to the 400mg most of us take. Even then it's very common to have tummy problems as you did but for most people they go after 2 weeks as our body gets used to the drug.

Given your symptoms it sounds like it would have helped you a great deal once over the initial side effects.

love
Lily

 

[doris999]

Thank you,
Yes i had a biopsy done, and yes it is discoid lupus, i've been told it could be sjogrens, but so called specialist would not send me for tests, so i went to see our family DR and he would'nt do it either.
I asked for this referal, because the so called specialist just did not give a dam, i really don't know why he's supposed to be a specialist, he doe's internal medicine. He did say there was something wrong with my ammun system, what, he did'nt say.
i do have many of the criteria, but not enough for some DR's.
As for the plaquinel, it upset my stomach, i have problems anyway with it, but it did not help, also i had really bad gas, i could'nt cope with it and nor could my husband, poor man, LOL.
So i'm hoping this rhumie will do as much as poss for me, cos i'm desperate.

Thanks again,
Hugs & spoons.