I was compelled to join a forum tonight because dealing with lupus is something that is hard to understand if you're not dealing with it yourself, I think.
I was diagnosed about a year and a half ago, just before my son was born, as I had been itching TERRIBLY throughout my pregnancy. Like, deep itching, I used to use a chopstick to itch myself, and BROKE it. Nothing could soothe it. I would sleep for two hours a night, sometimes no sleep at all. It was terrible.
I finally got diagnosed at 32 weeks after Drs patronising and ignoring me for months. And treating me for something else. (A liver disorder.) I have SLE, possibly Sjogrens. I take thyroxine, as I am hypothyroid, and have taken it for years. Hydroxychloroquine made my itching worse so I stopped taking it. I had a couple of steroid injections, but the second one didn't work so I gave up on them. They also thinned my skin, which is not desirable when you're ripping at your own skin! During the final weeks of my pg I took dex, which got rid of the itching, but I tapered off post-preg as they hoped my itching would go down.
It hasn't gone down and comes and goes. It's with me most of the time though, I may get a couple of week break when I sleep through the night. I currently take chlorphenamine at night to help. I use E45 cream, as it is the only thing out of MANY moisturisers etc that I tried that didn't make me itch more, or make my skin feel greasy / uncomfortable.
Pregnancy initially made me flare up, and I think stress really makes me flare up, and having a young child can be very stressful! After years of being a sunworshipper, I now accept I have to avoid the sun, after a flare last year.
I'm afraid I do drink coffee and moderate alcohol-- I've given up alcohol for periods at a stretch, and it hasn't stopped the itching. (And of course all the way thru my pregnancy!) I may experiment with the coffee and see if that makes a difference. Any other diet /lifestyle tips would be gratefully received. I do exercise as much as I can, and am relatively active. (Altho still 15lbs overweight from pg which is nearly impossible to shift with fatigue / hypothyroid / a baby that prevents going to the gym!)
I'd love to chat with anyone who understands this itch and has any advice. I mainly came to find a forum tonight because I find it is so hard for friends and family to relate sometimes, when you complain you are tired. I am currently staying with my mum for a bit of support with the baby while we have house renovations done. I was so exhausted / fatigued today it was hard to talk to her, and when I try to explain she says she doesn't sleep much either. Same with hubby. The problem is, no-one wants to hear that you're tired, but this lupus thing is a special kind of tiredness, if you ask me! So tired I could just fall over some days. POOR US. Just wish I didn't then get made to feel like a moaner or slacker when I express how I am feeling.
Anyway - thanks for reading if you made it this far. If any of this rings true to you -- first diagnosis during pregnancy, itching -- I'd love to hear.