The Lupus Forum banner
1 - 7 of 7 Posts

·
Registered
Joined
·
3 Posts
Discussion Starter · #1 ·
About a year and a half ago I was working at a job I didn't like, in a windowless office filled with flourescent lights. I started simply feeling off - getting dizzy (off balanced) and tired. This lasted for 6 weeks. I used to power walk every day for an hour and I couldn't even walk to the corner. I managed to work without anyone knowing I wasn't fine but I would find myslelf having to shake my head to see clearly when I was reading.

I had a CT scan of my brain which checked out fine but had an elevated ANA (speckled homogenus). I saw a Rheumatologist and then went to the Cayman Islands for a week and by the end I felt fantastic. I felt fine for a year and half but then this summer I started feeling a bit off again (nothing like the last time) but decided to go back to the Rheumy and check my ANA again. It was still elevated and then more tests revealed I have a double stranded DNA marker. She gave me a difinitive diagnosis of Lupus and a prescription for an anti-malarial drug. (hydroxyl...)

I have Asthma (as of now they don't think it is related to Lupus.) I do get occassional headaches when I'm in stores like Home Depot/TJ Maxx and at work with overhead flourescents but only from time to time. I live at the beach and tan very well. I surf almost every day - my life is outside. I have no other symptoms. In fact, I'm working out every day and feel great.

Q: Should I take these pills?
Q: I have spent my entire life outside in the sun - do I really have to stop? I think this would put me into a real depression.
Q: Can I expect to get rashes - does everyone?
Q: Can I expect to have some sort of pain?
Q Should I stop taking birth Control pills?
Q: How do people deal with work - I'm worried about being under flourescents all day?
Q: Does everyone get the flu shot even though it has mercury in it - I read mercury exasberates Lupus.

AHHHH So sorry - just so overwhelmed by this right now and kind of devastated.
 

·
Moderator
Joined
·
11,410 Posts
(((Sparklinclover)))

Welcome. You have found a great site

I know how over whelming it is when you are diagnosed with lupus. You go threw so many emotions.

On the internet there is a lot of information about lupus. A lot of it is out dated so you need to check the date that it is written. It can really scare a person something terrible.

Dealing with the sun (in my opinion) you have to be very careful. Use sunscreen and don't go out during the hottest part of the day.

Q: Should I take these pills?
Yes, taking an anti malarials is the drug that we all start with and stay on. It is safe but you do need to get in and see an ophthalmologist. There is a very rare side effect that can happen to the eyes from using it.

Lupus is so very different from one person to another. Some get rashes others have organs get attacked etc. It is hard to tell you what you might get and might not get.

There are some covers that your employee can get to cover up the florescent lights.

Living with lupus is doable. We just adjust to how lupus effects us.
I have a brother that also has lupus, and he still works. Learning to listen to our bodies is one of the things we need to do. If your body says it has enough go lay down and rest or nap. Pushing threw will only result in pain and fatigue. Fatigue is one of the biggest complaints that we all share.

I hope this has helped you some. Have a good look around the site.

Love,
Lyn


 

·
Registered
Joined
·
15,684 Posts
Hello and welcome,

Lyn has given you good advice. It's a bit strange you don't have joint pain or some of the other problems we get with Lupus though. A diagnosis is usually based on meeting certain symptom criteria + some positive bloods. Admittedly a positive Anti-DsDNA is rarely ever found in other diseases, however it can show up occassionally as a one of. Has it been tested a couple of times?

With your headaches do you know if you were tested for clotting antibodies? If you were positive on those they might advise not to take birth control pills as there is a greater risk of stroke etc.

Not everyone gets the rashes as mentioned however the sun can do internal damage to us, I am wondering if you had a urinalysis done when your other testing was done? Kidney disease is one of the problems that can grumble along silently until it becomes obvious there is damage and renal involvement with your Lupus. That's why its so important to have regular check ups and try and take note whether you feel more tired and or sore after sun exposure. Having said that though, some people aren't affected by the sun, but that's pretty rare. It sometimes happens too that someone isn't affected but then it starts to happen.

Antimalarials are like a bit of an insurance policy and can help us from getting worse, so good idea to take them if you definitely have Lupus. They actually change the acid base of the cells and make it harder for us to make antibodies.

As far as the flu vaccine containing mercury most reliable sources say it is minimal or non existent by the time the vaccine has been made available to the public. If they don't detect any by that stage they label it preservative free. Here's some more info:

http://www.cdc.gov/FLU/ABOUT/QA/thimerosal.htm

Mercury has been blamed for so many things, most of them not proven scientifically.

Many people with Lupus get flu vaccines as they find that getting the flu either causes them serious infection or it puts them into a huge flareup of Lupus. If they can avoid that by having a vaccine then they feel it's worth it. Some don't get it, like me, because I don't tend to get the flu and I am also highly allergic to egg white and they are used in the production process.

If you have any further questions don't hesitate to ask :)

love
Lily
 

·
Registered
Joined
·
4,968 Posts
Hello and welcome to the forum.

I know the dx of Lupus is one that will take your breath away but the more you learn the more you will relax. Knowledge is Power and this is a great site to learn so much about what to expect. It has been a god send to me, the support I have received is unbelievable. Any questions you have and put here on the board will be answered. I learn something new every day by someone here.

I am sorry for your dx but sure glad you found us here. You have been given great advice so there is not much more I can add. What part of the world do you live in? I am in the USA, New Jersey which I have come to call the Arm Pit of the World.:lol::lol::lol: Once my son is done college I am outta here!

Anyway, nice to meet you and join us in the chat room sometime. We tend to have fun in there and if you have questions they are answered right away by someone else in the room. Take care and remember to listen to your body. If it says your tired............take it easy. This is key when you have anything auto immune going on.:wink2:
 

·
Premium Member
Joined
·
7,567 Posts
Hi and welcome to the site. It is a great place to get info and support. It can take a while to adjust to having a chronic illness. We go through a whole range of emotions. You have already been given excellent advice. I hope it helps to answer your questions.

Take care

Deb
 

·
Registered
Joined
·
3 Posts
Discussion Starter · #6 ·
Thank you

Thank you everyone for your advice and encouragement. I will definatley start taking the anti-malarial pills and have placed a call to my Rheumatologist for some questions I still have. I don't know if they have checked me for clotting issues and I did not have a urinalysis done.

I'm just wondering if anyone has lived with a mild case of Lupus for most of their life and what it looked like? My passion is surfing, sailing and hiking and giving that up might kill me - Is 85 sunscreen a good precaution or not good enough?
 

·
Registered
Joined
·
15,684 Posts
Hi,

Many people once they start on the antimalarials find that is all they need and their disease goes into medicated remission. Nothing is set in stone of course because we are all different and no-one can predict an individuals course of the disease. You might not find a lot here who are in that category though ;) because they are out living their lives :)

The main thing with sunscreen is to make sure it filters both UVA & UVB rays - in some countries that's called a broad spectrum suncreen. There are lots of different strengths around, but main thing is to apply it 15-20mins before going out and re-apply at regular intervals. Of course swimming and sweating etc. would necessitate more frequent applications to provide good coverage. Good idea to wear a broad brimmed hat too.

Hope the Rheumy gets back to you soon. Take care,

love
Lily
 
1 - 7 of 7 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top