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Rolla, ND | Sorry about both the diagnosis and losing your child.
Due to my own problems I fairly knowledgable about the autoimmune diseases. As far as what to expect, that's one of the things about Lupus, it's just so variable.
As far as getting pregnant, some women see their symptoms pretty well disappear during pregnancy and others get worse. No way of knowing.
As far as in general symptoms include, pain, particularly in the joints, skin rashes, lupus is rather famous for a rash on the face, and fatigue.
One other thing that's fairly common is pain in the chest due to swelling around the heart and lungs.
Now how it's treated depends largely on how bad the symptoms get.
Nonsteroidal antinflammatories are one big thing to help with the pain, the swelling, and help against inflamation. Over the counter might be enough, sometimes doctors prescribe some too. If it's the same active as an over the counter you could just as well, in most cases take the over the counter. Have the doctor speak to you about maximum dosages, what to avoid while taking them and any symptoms that if they happen mean to get back in quick or quit taking them. More than a few people die from NSAIDS so it's not something to not pay attention to.
Then there are antimalarials. I don't think anyone knows why they work but for many they help quite a bit.
Then there are the corticosteroids. They are the best and worst drugs made. Very effective, lots of side effects. One big thing that should be the standard with steroids but which most doctors seem totally clueless on is pulsing them. Doctors seem to love a certain dose every single day. This is effective against inflamation but brings on lots of side effects. Better is a higher dosage say every third day. Some papers speak of a 90% reduction in side effects by pulsing and often the inflammation ends up being controlled better. Ask the doctor about it. If he doesn't know what you are talking about find a different doctor. He might call it intermittent dosages.
Now some have very severe symptoms. Kidneys attached, blood vessels inflamed, seizures, etc. It's really ugly for those people. If you get into that, you will have high dosages of corticosteroids plus they likely will use meds to try and shut down her immune system because her immune system is trying to kill her.
One of the frustrating things is that people will come out of the wordwork telling you of every quack remedy that supposedly works. Try to be gracious about it.
How you take it all depends a lot on your personalities. Try to get rid of much drugery around the house. Have a maid come in every couple of weeks and do the detail cleaning. Make sure laundry is as easy to do as possible. Watch yourself and if you are the type to make a mess as you go try to learn to not be that way.
The most frustrating for many is just the brain fog and fatigue that is so common. If you ask your wife about brain fog what does she say? Some don't have it but it's really common. And it's a pretty self descriptive name, it's just like you walk around in a fog never really wide awake and alert. Tough to do even the simple things of life. | |
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Wife diagnosed with Lupus
