[adaline]

it all started i went to have some places on my face removed and in the biopsy it said changes seen in lupus erythematosus is raised more studies are recommeneded i am in pain alot in joints and hips itch all over when i am in the sun hard to get going in the morning 45 fill like 80 in the morning my crp had been high since 2004 doctor thought i had lupus then ana was normal and is normal now been hurting for 10 years also was diagnosised with
Raynaids 3 years ago also have a leasion on my liver has anyone had this happen to them with biopsy on the face thanks ada

 

[Clare.T]

Welcome to the forum Adaline

I am sorry to hear your health is so poor and about the possible lupus. Skin lupus can have other lupus symptoms even when the ANA is negative, such as joint aches and pains. Your doctors should run a full lupus panel and do a urine test to see if there are any other signs of lupus. Antibodies called anti Ro are often found when there is no ANA. A full blood count can show up abnormalities such as anemia. It's a good idea to have thyroid tests done too.

It sounds as if you have already had some tests done but have you seen a rheumatologist yet? I suggest keeping out of the sun as much as possible and using sun block if you do have to be out in it. Protective clothing too if necessary.
The Raynaud's might be a sign of more widespread connective tissue disease but I know little about liver disease. I suppose that's being further investigated ? Lupus rarely affects the liver directly.

People with lupus skin problems are often started at once on an anti malarial ,Plaquenil, which will help with skin and joints and also help to get the lupus under control so hopefully it won't worsen. Your doctors might be wary of using it just yet because of the liver problems but ask them about it.


Please let us know how you get on - we'll help you as much as we can to get answers so don't hesitate to ask for further advice. Let's hope it won't be long before you are feeling much better

Bye for now
Clare

 

[adaline]

thanks so much

clare thanks i have a appt. with a rheumatology in march 2009 at uva my family doctor said that the skin biopsy means nothing it is so bad when you can't stand to be in the cold and you can't handle the sun has anyone on here been diagnosised by a skin biopsy.

 

[Maia]

Yes, we have had several people diagnosed by skin biopsy alone. Hopefully they will come along soon to share their stories with you.

March 2009 must feel like a long ways away to you... you can call and ask to be on their cancellation list. It is hard to get in earlier especially when it is a first appointment because they set aside a larger block of time for first time patients because there is so much to go over during that first visit (family history, your medical history and present symptoms, full physical/joint exam, blood/urine test, etc.). But it's worth a try I think to see if you can get in early on a cancellation list.

 

[adaline]

maia thanks yes they told me to call back jan the 1st for to be put on there cancellation list if it is lupus from the skin biopsy what is done the places are not that bad put my forhead is like i have has botox injections lol it is so tight and dry i have used eveything nose and cheeks and chin feel dry to but it only turns red when i go out side this web site is great for information

 

[Clare.T]

There are several people here who have been diagnosed by biopsy, with some antibodies appearing only later. My diagnosis was from the appearance of my skin problems, confirmed by biopsy. This was so long ago they didn't have all the lupus tests, but many years later I had ANA and the anti Ro antibodies

I wonder why your GP discounts the biopsy.

Good Luck and I hope you can get an earlier appointment


Clare