[sammy j]

Hi i was told i have SLE march 08 having felt very ill with rash that started on my face in the nov 07 and joints seized up,anyway nobody knew why so battled on until jan 08 when i took myself off to hospital with clot on the lung only then i was sent an app to rhumatology where a great specialist told me i have lupus.
I have an underactive thyroid which was discovered during pregnancy 06 and take warfarin because i had a PE, i have just finished taking steroids that did nothing for me have a week ago started mycophenolate and take plaquanil.I wish it was something that would stop and go away but am learning that is not going to happen,right now im feel v tired all the time and my face is very sore with rash prob from uva but no joint pain for a change.
Anyway thats a bit about me any advice would be very grateful.

 

[lazylegs]

Hi Sammy,

:welcome: to the forum.

Unfortunately Lupus does not go away, but it can be controlled. My best advice is to listen to your body. It gives you clues when you need extra rest or something isn't right. Also take your medications faithfully. Then of course you should stay out of the sun.

Since you have a little one it will be more difficult to get the rest you need. I suggest you nap when she does instead of running around doing chores. Even if you can't sleep laying down with your eyes closed can be very refreshing.

I hope the Plaquenil and Cell Cept work for you. The Plaquenil takes awhile to kick in. In my case it took 6 months, but it varies for everyone. The Cell Cept should take about 4 weeks to become effective.

Don't be shy about asking questions. We have all been where you are and are more than willing to help if we can. Also you should try the chat room. It is a great way to meet some of the other members. You can also get instant feedback on any questions you might have. Hope to see you in there soon.

Take care,
Lazylegs

 

[onetay]

Sammy,
Hi and welcome to the site. It seems that you are learning the joys of having lupus lol. I know it is no laughing matter but as many of us have learned if you can't laugh about it then you would be crying all the time. I am glad that you found the site and hope that you get some support and meet some friends along the way.

It will take time but there is so much information here that is helpful and encouraging for many of us. The chat room is a good place to get instead feedback to question and concerns, or just to let off some steam. I hope you are doing well and feeling well.

 

[keebler]

Hi Sammy,
Welcome to the lupus site.
Yes, unfortunately lupus wont go away.

I have learned that you have to take cues from your body. The fatigue that goes with it is hard to deal with. You cant push yourself to do more when your body says no. The fatigue is like when your balloon has let all the air out and it is flat, nothing left. That is how it feels for me. You will only pay with more pain and fatigue.

You are right about uva. Using sunscreen is a must with us. You need to protect yourself from the sun, florescent lights. I have been bothered when I go shopping. It is all those lights.

Love,
Lyn

 

[sheila t]

Just wanted to welcome you to the site Sammy. Hope very much your new meds will help with the pain

Sheila x