new to this site and to lupus
Hi I am new to this site and could really use some advise I was just recently diagnoised with Systemic lupus erythematosus and I have been going through hell.
It started with just my feet swelling and I was unable to walk or stand for long periods of time and I tried to ignore it but it has since changed into something that most days I can not handle. My feet, ankles, knees, fingers and even my toes swell to the point I can not bear it.
I have recently started seeing a great doctor and she started me on perdisone to try to make it bearable for me. I am also taking methotrexate and I am really scarred of the side effects but they think that this is the best form of treatment for me right now. I am just looking to get some insight and some advice on how others are coping with this monster called Lupus.
Hi, and welcome.
Lupus can be a really frightening word when you first hear it. Learning as much as you can about the disease is the best way to control the fear and get your life back. Many people with lupus can live pretty normal lives with treatment, and the treatments are getting better all the time.
Methotrexate is in a class of drugs called DMARDs - disease modifying anti-rheumatic drugs. It can have side effects, like any powerful drug, but many people with rheumatoid arthritis have taken it for years to control their disease, and it can also be prescribed long-term for some lupus patients. If you go to the medications link on this forum, you will find several posts about methotrexate, and a number of people who are taking it, who can answer your questions from personal experience. They can probably give you some hints about how to avoid or minimize the side effects.
Thanks I really did not know that there were so many people out there going through what I have been going through and even though my family has been there for me it is hard for them to really understand how it feels to find out that you have something like this. I have 2 small children and I am really trying to fight this as hard as I can for the kids and my husband. How did you deal mentally when you first found ou? And what type of treatments have you tried?
I also have young children, and was actually diagnosed after my last child was born, although I'd had weird symptoms off and on since college, I always shrugged them off thinking they were related to endometriosis. I had a lot of trouble getting pregnant the first time because of the endo, and was constantly anemic, so I thought that explained the fatigue, hair loss, etc. Later I assumed the way I felt was normal - every working mom I knew was tired - plus I'd had three pregnancies almost back to back.
It was hard at first - it still is. I felt guilty about not being a supermom, pta mom, etc. and felt like I was depriving my kids because of my illness, so I would push myself beyond reason trying to do it all and too stubborn to ask for help. I found out one thing really quickly, WonderWoman didn't have lupus and there's a reason she never had kids! I learned I had to set limits for myself as well as my kids. My husband was an only child - his mother never worked outside the home, and he expected to be waited on just like the kids - so there was a lot of stress and a few arguments! But we worked it out.
Treatments for lupus can vary from person to person, depending on your symptoms and whether you have organ involvemnent. So you will need to discuss this with your doctor, and work out the best plan for you, Parenting with lupus is like a circus act, you're constantly making adjustments and sometimes you lose your balance - so it's important to have a safety net of family and friends in place to help with the kids. But you can get through this! And there are always people here to listen - so you never have to feel alone with this disease.