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Hello, all. I was diagnosed with Systemic Lupus nearly two years ago. Since then, I've done all I could to deny and ignore it. I'm in the middle of what I assume is a flare and need some advice.

I have a rheumatologist, but he never really gave me much information and no treatment plan. He's allowed me to remain in my lovely little denial box. Recently, I began suffering from horrendous PMS and evil acne break-outs. I was set to begin a course of birth control as prescribed by my gyne, when the nurse read that I had been diagnosed with Lupus in my file. They told me that I needed to speak with my rheumatologist and get an okay from him before they would allow the prescription. He was pretty serious when he told me that it was not a good idea to take the pills and that it would cause flare ups to become worse and more frequent.

Well, that just pissed me off. I'm 34 and feel awful having these giant blister like marks on my face. It grosses me out, I can't imagine what other people must think...

So, anyway, I've been doing some research (finally) and I see that there is so much involved! I feel like I just don't have the whole story. I wonder if I should get a new doctor, but mostly, I wonder what I can do to feel better that maybe doesn't involve medication.

Any advice you can give would be appreciated. I know it's time I give in and get started on some sort of treatment before it gets out of hand. :(

Maggie
 

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Hello Magpie and welcome :)

I think many of us go through a denial phase and that can be quite nice if we can handle it. Unfortunately, you will almost inevitably come to the flare that isn't going to be ignored.

I, like you, never ever took meds before all this but here I have to say that taking baseline treatment for your lupus is very important. Taking that baseline medication should mean a reduction in the frequency and severity of flares. It can help keep the disease stable. You can see where I'm going here, it is important.

Most people will be put on medication called plaquenil. It's an antimalarial (yep, I know strange) which has been found to significantly help in the control of lupus. It is disease modifying. It has few, or usually no, side effects. It is one of the safest things you could ever take (and that includes many OTC meds). Its one less good thing is that it takes a while to start working, often between 3-6 months, sometimes even longer. Often a combination of plaquenil and an NSAID when needed can be enough to control the disease for many people.

When that one baseline med doesn't help enough, there are plenty of other options. Today's treatment plan for many people who are more severely affected is actually quite a little cocktail of meds. That can sound horrifying but in fact it is done so that treatment can be balanced to each individual and also, very importantly, so that the more serious side effects of some meds can be avoided by keeping doses lower.

There are several things that can be done to help that don't involve medication. You have to remember that their effectiveness is limited and that SLE remains a serious disease.

It is very important to pace yourself. Pushing your body through this disease doesn't work, it only risks making a flare worse. If you feel you need rest, then you do need rest. Avoiding the sun can also be very important. Even if you are not very photosensitive the sun can cause inflamation and flares. The best is to stay out of mid-day sun, cover up as much as possible and wear sun cream that is at least factor 30. There are many other little things to do but my mind is foggy this morning, too early :lol:

If it is any consolation, I used to have acne like, angry spots on my face and sometimes on my back. I used to think it was just bad luck but at the time I also used to get nose sores and mouth ulcers. My skin has been perfect in all respects since starting plaquenil (and this is long before the 3-6 month kick-in time). It has also reduced my photosensitivity which was very severe. I am still very careful about sun (factor 50 minimum) but I have noticed a difference.

The last thing I wanted to say is that although you need to take this disease a little more seriously than you have done so far, the posts you see here on the baords are not necessarily representative of the general lupus population. Most people who post here are either looking for diagnosis, newly diagnosed or the rarer more severely affected. Just that to encourage you that may lupus sufferers are out there getting on with life (and no doubt indulging in plenty of denial along with the meds they need :lol:).

bye for now,
Katharine
 

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Many women who have lupus are able to take the birth control pill, particularly if they have milder disease (no organ involvement).

This is a quote from an article Clare T posted recently

Dr. Bermas
There is recent data to suggest that oral contraceptives are safe for patients with mild lupus and who do NOT have the presence of antiphospholipid antibodies -- either an anticardiolipin antibody or a lupus anticoagulant. Oral contraceptives do not appear to increase lupus flares in people with mild disease.
http://www.lupus.org/webmodules/web...mmunitywebchats.aspx?articleid=2041&zoneid=93

Lupus is not an automatic rule out for birth control pills, although antiphospholipid syndrome is. So, talk with your rheumie, you may be presently surprised.

hth, and best of luck with it all

raglet
 

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Hey Maggie,

Raglet is right. Mild lupus patients (i.e. patients without organ involvement) and with no APS may be able to take birth control pills. Have you ever been tested for APS?

APS is an autoimmune disorder that makes one's blood more prone to clot; sometimes people with lupus have it alongside their lupus but one does not need to have lupus to have it. Also, sometimes people with lupus only have the APS antibodies in their blood without any clotting incidents. I think, like Raglet and Clare said, if you have APS or the APS antibodies (lupus anticoagulant and/or anticardiolipin antibodies) then oral contraceptives are not safe for you. If you don't have APS or the APS antibodies there is room for discussion with your doc regarding birth control pills. MIght be an idea to discuss this with your doc though as he would know if you've been tested for aps and if you've tested positive for it.

There are other treatments for acne though besides birth control pills (if it turns out you can't take them). A dermatologist might be able to point you in the right direction there and discuss all the alternative treatments with you.

Hope you get to the bottom of this soon! :)

:flowery:

Zoi
 

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Hi Maggie,

Welcome to the board. You have been given great advice here so far. I am new to Lupus and learning myself. Denial is a comfortable place to reside yet at some point accepting our diagnosis and getting on the right medicine to get it under control is a good thing to do.:wink2:

I think you should look for another Rheumatologist who might be even more qualified to treat Lupus. The fact that your Rheumy doctor told you no to birth control pills is baffeling, unless you do have APS.

Ask for a copy of your records and go for a second opinion. It could not hurt anything. Also, there are other medicines you can take for the acne on your face. Your dermatologist should have plenty of things he can give you besides bc pills to help get it under control.

Maybe a biopsy of the area is in order here to see if this may be a discoid Lupus instead of a acne......just a thought.

Hope to get to know you better and good luck as you move from denial to acceptance. It is a rough bridge to cross yet once there you will be better off.
 

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Discussion Starter #6
Thank-you all for your words. This has been tough for me. I'm normally an extremely active person and telling me to stay out of the sun is like telling me not to breathe! I've decided since last night to look for a new doctor. I don't like changing doctors, but I think I need someone to tell me what I need to do now and not wait for something horrible to happen. For now, I'm going to look around and see what information you guys have to offer. So far, the information is pretty eye opening!

Maggie
 
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