Mods: This may be better suited for IMHO since it’s related to a medical issue.
My 32 year old daughter has recently been diagnosed with Lupus, which is kind of a relief since they had thought it might be MS. I have been doing some research and it sounds like a fairly manageable condition.
She gets flare ups every now and then, and they are quite debilitating when they occur, but it looks like there are medications, such as corticosteroids that can control the outbreaks so she can live a relatively normal life. She’s a single working mom with a 2 year old at home so it can be quite challenging on her worst days.
Does anyone on the board have Lupus, or have a close friend or family member with it? From what I read there is an increased risk of serious problems associated with the heart and lungs and I’m curious if anyone has had to deal with those. Any non-anecdotal information would be appreciated.
I do not have lupus, nor do I have relatives with it, but my family does have experience with corticorsteroids. They can be wonderful, extremely powerful medications. They can also have serious side effects.
I recommend Coping with Prednisone which discusses coping with being on corticorsteroids. Even if your daughter is not on such medication at the moment it would still be a good reference book for her. For you, it would also help inform you about your daughter’s medication and it’s side effects.
I’ve known many people with Lupus, and I’ve lived my whole life with Reumatoid Arthritis, which is sort of a relative. (The auto-immune diseases seem to cluster - hold hands and sing ring-a-rosie around the unfortunate person. I’ve always been lucky to have only one of them.)
It’s very manageable, yes, and she can live a full and happy life. She will need to learn pain management and coping skills if she’s never had a chronic disease before. Not sure what else to advise but I’m happy to answer questions if I know the answers.
Thanks Broomstick and JcWoman.
My real concern is about ‘other serious complications’ from Lupus I keep reading about. I don’t know how common they really are, or whether it’s something I need to worry about, and if she decides to have another child if that’s going to be an issue for her. I guess she’ll find out when she meets with the Rheumatoloist.
My daughter has never had a chronic disease before, but she it taking it well under the circumstances.
Keep in mind that they could be telling you the worst case scenarios to prepare you. The odds of them happening are worthy of asking, and of course everything depends on risk factors. It’s now known that there are correlations between the inflammation of auto-immune diseases and inflammation that causes cardiopulmonary issues. That’s probably what they’re talking about. If she can stay in relatively good health and avoid foods and activities that encourage inflammation, she’s not likely to have problems.
I feel like that was very rambly, sorry. I would just recommend that she take things slowly, have a lot of patience with herself, investigate different diets (paleo and such), and get serious about stress relief programs. I’ve been doing monthly massages for years now, even though it does seem pretentious and luxurious to say that… stress relief is important. Meditation, massages, tai chi, yoga, whatever works for her is good.
I know there is some limit about serious answers before a, well, less than serious answer…
Yesterday, I was going to post this, but refrained because there weren’t enough answers. Today, there aren’t many, but I hope enough time has passed to allow this. Ready?
It’s never Lupus.
As you were,