25 & newly diagnosed- so many q's?

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Regular Member

Date Joined Mar 2008
Total Posts : 39
   Posted 3/15/2008 3:34 AM (GMT -6)   
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

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 3/15/2008 10:33 AM (GMT -6)   
((((( SFnative )))) Bless your heart, it sounds like you've been though a lot. You've come to the right place, there are wonderful people here that share their experiences in hopes to help others.

Your symptoms sound pretty bad, is Plaquenil the only med you are on? What dose do you take? How long have you been on it? It can take up to a couple of months to feel the full effect of the med, as for me I could tell a difference in my fatigue first within a couple of weeks and didn't think it was doing much for my joint pain until my doctor wanted me to come off it, needless to say it didn't work. I am on 400mg a day.

No one here can really answer your question, but I can say it sounds like your lupus is NOT under control at all. When do you see your rheumy next, if it's not soon you may want to put a call into them? You definitely need to let him/her know what it going on. You may need a better cocktail of meds to control all of your symptoms, and this process could take a while. It's a trial and error some meds may do well while others don't.

I am sorry to hear you are feeling so badly, please keep us updated on how you are doing. Take care

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 3/15/2008 2:56 PM (GMT -6)   
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.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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New Member

Date Joined Feb 2008
Total Posts : 5
   Posted 3/15/2008 9:53 PM (GMT -6)   
HI!  I was reading your post and honestly had to do a double check to make sure I hadn't written it.  I am 27 and have all of the same symptoms as you do.  I am not sure what doctors you have seen and the full extent of your medicenes, but I have CU, or Chronic Urticaria / aka Chronic Hives.  Mine are called Chronic Autoimmune Urticaria.  But most cases are called CIU, the "I" standing for idiopathic, or 'no none reason'.  Anyways, the deep swelling you are having in your chest (which is the worst for me) could be angiodema.  It is a deeper swelling that affects your lips and eyes too.  The bottoms of my feet and the palms of my hands swell so much I can't use them.
The Chronic nature of the hives means that it can come and go once, or for a few years, or for your whole life.  Some people experience remission, some don't.  I have experienced many remissions, many years long.  There is hope for you!  No one has found a definite reason or cure.  Most who suffer learn to treat the symptoms with different combinations of antihistamines.  I encourage you to do some research about this condition, as it is so much like mine, I think you might find it is what you have.  There are a lot of different drug combinations you can try, some might work, and some might not.  Those of us with chronic hives will do anything to find relief.  I am currently taking one zyrtec (an H1 antihist) and one zantac (an H2 antihist) in the morning and then taking Atarax (prescribed by dr) and benedryl at night.  This is working for me now.  I just stopped taking claritin, as it stopped working.  My doctor has been little to no help to me, I have been searching for answers from them for 15 years.  They all tell me the same thing.
If you have any questions, I would love to help you out.  I think you should definately see a doctor and get advice on the use of antihistamines...almost all of them are available OTC.  I know how awful you must be feeling, so sorry you are having to go through this.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 3/15/2008 11:17 PM (GMT -6)   
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.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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Regular Member

Date Joined Mar 2008
Total Posts : 39
   Posted 3/16/2008 1:05 AM (GMT -6)   

Thank you everyone for the response.

I have an appointment with a rheumy that is not until next month. I think I will call on Monday and talk to the doctor directly. The receptionist won't help me but he might.

Chrisnjenna thank you because my doctor refuses to name a condition and I feel like I need a name so I can research and find a way to "fix" me. It sounds like I do have the same things as you.

Also my doctor hates prednisone and does not want to give it to me. I went on vacation for 3 days 2 weeks ago and had to BEG her to give it to me. It helps but not 100 percent. she gave me a week supply.

I also wake up ever morning and take Claritin for Hives, its a new medication and hard to find but it works some what. Thanks for the H1 H2 info the E.R doctor was telling me about that but I didnt know which meds are for which one.

This is why I wanted to ask people who know. Doctors can give you the run around and they dont like to tell you everything. Its not there fault. They dont want to get sued. But thank you for helping me out.


Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 3/16/2008 1:12 PM (GMT -6)   
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.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 3/16/2008 1:28 PM (GMT -6)   
Hi Jenn,
   Welcome to the forum. I'm sorry to hear your having so many problems. The others had great advice so nothing for me to add. I hope you get on the right treatment plan soon to help you feel better physically and mentally. We do understand how this disease will affect you in all areas of your life. Hang in there and take care. Keep us updated. You will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

New Member

Date Joined Feb 2008
Total Posts : 5
   Posted 3/16/2008 6:50 PM (GMT -6)   
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...

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 3/16/2008 7:10 PM (GMT -6)   
I just wanted to welcome you to the forum and say "amen" to the responses you've already gotten. You need aggressive treatment quick. You will find that you have to be very aggressive, proactive and informed to get the kind of health care you need. Trust me your doctor is not the only one who hates prednisone, but for many of us it has been a life saver literally! I also have multi organ involvement. Keep pushing for treatment and answers until your symptoms are under better control! God Bless you, Judy

Regular Member

Date Joined Mar 2008
Total Posts : 110
   Posted 3/18/2008 9:52 AM (GMT -6)   
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.
dix: lupus sle, hypo-thyroid
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day

Regular Member

Date Joined May 2007
Total Posts : 474
   Posted 3/18/2008 9:56 PM (GMT -6)   
Hi Jenn,
One more thing to consider - allergy testing! My allergies are unbelievable and my PCP, allergist and rheumy all work together to keep me going. If something triggers an allergic reaction, the lupus will quickly flare and life becomes rough!
Good Luck. I hope you feel better, soon!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.

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