25 & newly diagnosed- so many q's?

I am 25 years old. Thought my life was perfect. I am a student and promo model. Just started doing great in both. Live healthy. My family history is amazingly perfect, no one has ever been sick and they all live to 90.

So 3 months ago I start getting hives all over then many symptoms quickly follow. Chest pains, swollen joints, knots so big in my feet I can't walk, tightening of the chest, swollen throat, severe arthritis in my hands and a bloody rash on my legs. Not to mention the fact I gained 20 Lbs in ONE WEEK!

Basically I have been housebound since December and feel like I am going to die. I am now on Plaquenil and its doing nothing. I have maybe 4 days out of the month where I am okay. But the rest of the time I am in so much pain. My face is always swollen, so are my legs. I don't want people to see me. I hide from my live in boyfriend of 5 years. Now my hair is falling out.

OKAY , FINALLY --here is the question:

-Is this ever going to let up? or is this the rest of my life?

  Maybe someone should lie to me cause i cant live like this.

- Is anyone else taking Plaquenil? is it working for anyone?

I stopped eating everything you arent suppose to eat, taking my meds...but I think I have been in a "flare up" for 3 months

Hi SFnative and welcome. I'm so sorry to hear about how sick you have gotten and how life as you knew it got swept out from under you. I second everything Stacie told you. Like she said it can take a long time for the plaquenil to really kick in - sometimes 6 months to a year. It does not sound like your lupus is anywhere near being under control. I would talk to your doc about how miserable you are and how little quality of life you have (if you haven' already). It sounds like you might need some additional meds or maybe even something short term to help you pull out of your flare. Just don't give up hope. A lot of us go through flares, but many of us all go through some periods of feeling pretty decent too. There is hope that you will have times where you have a decent quality of life. A lot does change though and lots of grief and loss that takes a while to deal with, but we are here for you through all of that. This is a very supportive group and it can help a lot to come here and to know that you are among people who really understand. Hang in there and please ask any questions you have. It sounds like you are doing everything you should with your lifestyle and diet and I give you a lot of credit for that - it's not always easy. Take care and I'm glad you joined us.

Welcome to the for SF, One thought . . . CALL YOUR RHEUMATOLOGIST!!! If you don't have a rheumatololgist make sure you find one. If you need a referral for your health insurance than call your GP right away and ask for the referral. The plaquenel will build gradually in your system and will be an important part of your treatment . . . but there is no reason for you to be stuck with such severe symptoms. Make sure you let your rheumy know how bad off you are. Keep a symptom list and write down EVERYTHING that is wrong and everything that hurts so you don't forget something. He won't know you are in such bad shape if you don't call. Even if your appointment is scheduled for two weeks from now . . . get a hold of him Monday. I hope you'll keep us posted. Blessings!

Jenn,

There are many alternatives for treating lupus and each patient responds differently.  Prednisone is an awful drug but it saves lives and not everybody has the horrible symtpoms. I have been on it for 2.5 years.  Your doctor is not being aggressive enough in treating you and I suggest that you find another rheumy who is experienced treating lupus and get a second opinion. 

As others have noted you case is NOT under control.  Plaquinel is just one med and not the quickest acting or strongest.  Sometimes it takes a "cocktail" of meds to get an individual case under control.

Your rapid weight gain is due to edema....water retention.  It is common for lupers to have kidney involvement and a condition called proteinuria can cause very rapid and large weight gains.  It happened to me twice where I gained 15+ lbs in a few days and looked like the Michelin man.  This condition is usually easily controlled with an ace inhibitor but it should not be ignored as it can lead to permanent kidney damage.

Treatment of lupus is a long term affair.  Taking prednisone or whatever other med for a few days or weeks is usually not sufficient to get your immune system under control.  Treatment is something that is done on a long term basis and it often takes many months or even years to get things under control.  Some patients go into a remission but flare later on.  Others need a maintenance dose of some controlling med and often do well and lead normal lives.

My case is much more complicated than just lupus.  I have mixed connective tissue disease which is lupus, scleroderma dn polymyositis.  I almost died at the end of 2005 and entered a rehab hospital just 2 years ago as a quadriplegic who could not swallow.  Polymyositis took 40 lbs of muscle and left me a cripple in just a few days.  That was after gaining all the water weight so I actually lost about 55 lbs in the hospital.  I had internal organ involvement as well.  Today, I am living a fairly normal life and have returned to golf, skiing and tai chi after more than 2 years of therapy.  I am still on prednisone and imuran but on low doses and my doctors do not want to take me off and risk a relapse.

Think about this as a long term, lifetime battle.  Treating lupus is not like treating an infection...get some antibiotics for a few days and it goes away.  You can return to a normal life but your doctor needs to find the right course of treatment.  Hopefully there will be more effective, targeted meds in the near future that will help those with lupus.  For now all we have are the corticosteroids and immuno suppressants that tranquilize our immune systems and can cause lots of side effects.

By the way, I am 65 and you have youth on your side.  Find another doctor and get a second opinion.  Not all rheumys are experienced and you are going through what many with an AI disease suffer....finding the right doctors and an effective treatment.

Hang in there.

Bill

Just one more thing...Have you had your thyroid checked? I know it can be considered an autoimmune problem and is sometimes linked with hives. I had to have a thryoidectomy for Graves diease, but went back and forth between being hypothyroid and hyperthyroid for many years. I gained 30 lbs in 3 months when I was hypothyroid...

Hi Jenn,

I agree with the others. You need to see your rhuemy sooner than one month from now. It does not sound like she is being very aggressive with your treatment and diagnosis, and if she is refusing to be then it's time to find a new one. The LFA website helped me to find a very good rhuemy in my area. I went through two before him that just weren't experienced enough with lupus to know what to do. The first one I saw insisted that I didn't have lupus, and I ended up in the hospital 6 months later with my kidneys shutting down. That was 9 years ago, now I live as normal a life as a bored housewife can get. I hope you get help soon, and good luck.