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katymcd81
Posts: 73 Member
Hi!
I was diagnosed with lupus on Monday after over 5 years of skin rashes and joint pains, and am just wondering what to do now!
I am waiting to see a rheumatologist, and am waiting on the results of a skin biopsy, as my main rash is thought to be urticarial vasculitis. I tested positive for ANA, Anti-DS-DNA, and Anti-Ro (the immunologist says the anti-Ro means there might be a chance of Sjogren's coexisting with the lupus). I am starting hydroxychloroquine (200mg twice a day) tomorrow.
My main symptoms are severe urticaria and photosensitive rash, pains in my joints, tiredness, and headaches. Wondering if a longstanding stomach pain problem is also connected, but going to ask the rheumatologist this. The dermatologists I saw on Monday were amazing, and my GP is really supportive too...after years of basically being told 'have some antihistamines and suck it up', I'm in shock at being believed and taken seriously, lol! I'm lucky that I don't appear to have any kidney/heart/lung involvement, and the dermatologists think it shouldn't progress.
I'm also nearly halfway to my goal weight, having lost 12.5lb so far and having 16 or so lb to go. I've just increased my daily calorie goal (changing projected weight loss to 0.5lb per week), as I noticed that MFP had it set below my BMR, which can't be good...I think I need to be gentle with myself for a little while. I'm obviously going to keep up with the weight-loss and fitness, I feel better in myself generally when I'm lighter and exercising regularly, even if it is sometimes obscenely hard work.
So I suppose I'm really just looking for people who are further on in this than I am, and maybe some tips and advice for staying healthy.
I was diagnosed with lupus on Monday after over 5 years of skin rashes and joint pains, and am just wondering what to do now!
I am waiting to see a rheumatologist, and am waiting on the results of a skin biopsy, as my main rash is thought to be urticarial vasculitis. I tested positive for ANA, Anti-DS-DNA, and Anti-Ro (the immunologist says the anti-Ro means there might be a chance of Sjogren's coexisting with the lupus). I am starting hydroxychloroquine (200mg twice a day) tomorrow.
My main symptoms are severe urticaria and photosensitive rash, pains in my joints, tiredness, and headaches. Wondering if a longstanding stomach pain problem is also connected, but going to ask the rheumatologist this. The dermatologists I saw on Monday were amazing, and my GP is really supportive too...after years of basically being told 'have some antihistamines and suck it up', I'm in shock at being believed and taken seriously, lol! I'm lucky that I don't appear to have any kidney/heart/lung involvement, and the dermatologists think it shouldn't progress.
I'm also nearly halfway to my goal weight, having lost 12.5lb so far and having 16 or so lb to go. I've just increased my daily calorie goal (changing projected weight loss to 0.5lb per week), as I noticed that MFP had it set below my BMR, which can't be good...I think I need to be gentle with myself for a little while. I'm obviously going to keep up with the weight-loss and fitness, I feel better in myself generally when I'm lighter and exercising regularly, even if it is sometimes obscenely hard work.
So I suppose I'm really just looking for people who are further on in this than I am, and maybe some tips and advice for staying healthy.
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Replies
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Hi,
I was dx at 14, and have seen it all. My main problems are kidney failure, a seizure disorder (vasculitis of the brain), high blood pressure, and the antiphospholipid syndrome associated with SLE. I had a stroke when I was 26 becaus of that. Lupus sucks, and the one thing I can say is TAKE your medicines!! Especially the prednisone. They might (if you flare) give you solumedrol...it's IV prednisone. Just stick with what the docs say and never stop taking the meds.
About Prednisone. I was put on it at 16. My doctor put me on 80 mg/day. It made me SOOO hungry, and I ate all the time. It's difficult, but you will need to keep track of what you eat....to make the hunger go away (because this is Prednisone that's making you hungry, not the lack of food), try hot tea/hot coffee. Watch the sodium intake too. When I first started taking prednisone, I wound up in the hospital with congestive heart failure due to all the water retention.
Lupus sucks bad, and there are lots of support groups where you can meet people who have dealt with as well. I hope the drugs will kick you into remission :-).0 -
Hi Anna, thank you for your reply
It sounds like you have a really tough time with this...I am lucky so far in that I don't have any 'serious' involvement as far as I know.
I started the plaquenil on Thursday, hopefully it won't take too ling to kick in. I'm not going to be on prednisone routinely, I don't think, no-one has mentioned it anyway. I had a week's course in May when my skin flared up and was really swollen and bruised, and I had a fever and hideous joint pains, but I haven't had any more prednisone since then.
I'm finding it difficult to remember a lot of what the doctor said to me on Monday, so I am hoping my rheumatology appointment comes through soon so I can ask all the questions I have. I'm worried about the anti-Ro, I have read that if you have this and get pregnant it can harm the baby's heart, and my husband and I want to start a family soon...
This group seems pretty quiet, but hopefully we can still support each other 0 -
Hi Katy, I was diagnosed in May of 2012 after a year of on and off week long hospital stays and being sent home with nothing found my family Dr. finally just started to send me to every kind of Dr he could think of which included a Rheumatologist that made me do what seemed like endless amounts of blood work I was finally diagnosed with Lupus. I don't know if you have been put on Prednisone yet or not but it really made me gain weight bad i have gained 30lbs fast. Make sure you stay on all your meds and my Rheumatologist said having a baby can happen you just have to be very very careful. I don't know how much I can help you but I can atleast help support you if you need it.0
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I know some people who had kids...but the complications were pretty bad. They actually went into kidney failure, among other things. My advice to you would be to ask your doctors (gyn and rheumatologist) as they will all need to get together to follow you through a pregnancy. Please note that it is very risky to become pregnant...and you will need to be followed closely. If you flare during your pregnancy, you cannot take any medicines to knock it down. I've known 2 people whove gone through them, and they wound up on bed rest for the duration of the pregancy....babies were fine though.
I can't have kids, and I'm ok with that...so is my fiance. If we ever change our minds, we'll be adopting.0 -
I was diagnosed when I was 19.. I had 2 successfull pregnancies and 2 unseuccessfull ones. I had to take fragmin and injectable blood thinner 2x per day to prevent blood clot in the fetus/ baby. My lupus was not under control in my first successfull pregnancy and I ended up needed prednisone and delivered at 34 weeks... My 2nd successfull pregnancy my lupus was under control... I didn't have any problems but my daughter was still born early 35 weeks. It is harder to have babies when you have lupus but with the right team it is doable... I also have a son that i adopted at birth... And I love him just the same as the biological kids... However you get you kids... Marriage, adoption, biological they are a true blessing!!!0
