Recent Positive ANA / Lupus Diagnosis Questions HELP

what medications worked the best for you and why?
Plaqunel - 66.7%
lyrica - 0.0%
cellcept - 33.3%
methotrexate - 0.0%
cymbalta - 0.0%
Opiate pain Killers ( provide names so i can research i know nothing of these things) - 0.0%

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Oct 2014
Total Posts : 1
   Posted 10/6/2014 8:41 PM (GMT -6)   
I have been dealing with "unknown ailments for about 9 years. I am 29 years old, and two months ago, after having a very itchy/painful rash on my back and chest got the diagnosis of Lupus. I do not have any major organ issues Kidneys, Liver, heart, lungs all perfect. I was put on prednisone for 5 days to control the rash, which helped with itching, and then i was given plaqunil. The first week on this medicine, i spent apron 5-7 hours in the bathroom every day. every abdominal pain, and NO NOOOOO appetite. I've been on the medication since june, and while i have no rashes, my other symptoms are still causing ruckus -
1- EXTREME Fatigue ( despite prescribed dosage of 90mg of adderall )
2-frequent night terrors
3-numbness in feet and hands lasting slightly longer each time.
4-constant headaches causing blurred vision and tunnel vision/
5-muscle weekness.
6-joint pain/ swelling - knees jaw feet ankles
7-an over all contant ache/pain ( i say even my hair hurts )
8-when my period comes, i feel like a creature is ripping things apart, super heavy clotty bleeding.
abdominal pain
9-Almost no appetite EVER
10-my stomach hurts when i eat, i usually take up to 12 advil a day it can't be good for my stomach
11-ringing in my ears, followed by slight hearing loss.
12-i feel pain has gotten worse on plaque nil
13-my anxiety is back, sometimes i think i see things that aren't there
14-unable to motivate myself to go out for a day, it takes everything out of me to muster the energy to play with my one year old son
15: hand and feet go numb while I'm asleep, and it wakes me out of a dead sleep
*16 : i don't know what to call this, ill wake up in a panic i can see all around me,but I'm frozen my legs don't move nothing does, and i try and scream and i can't..anyone know what this is?
17: trouble urinating no pain, just i feel like i have to go and can't and its not like a UTI its different
18 my whole life I've always been hot, never that girl who was "oh I'm a girl and cold can i have your jacket " never me, Up until last year i never used my winter jacket i find myself waking yp cold, and yet I'm covered i sweat.
19 : I blank out. EX: at work i left a note for my staff, i re wrote it later on, because i don't remember writing one at all... its all short term memory stuff
20-irritable easily frustrated no patience
21-ive noticed I've been pushing people away from me possible that social anxiety is playing a game with me, I've always been super outgoing, now i don't leave my house much.
22- brushing easily ( all my bloodwork is perfect ]
If anyone can just read this, and give me some insight, I'm scared, and don't have anyone to talk to my mom doesn't think I'm sick because i don't look sick, she said you wlll use any excuse to be lazy. She just doesn't understand

what are some medications that have been successful
any headache relief?

Please Please help

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 10/7/2014 1:08 AM (GMT -6)   
Most of what you describe are typical lupus issues.

*#16 is called sleep paralysis(?). It's harmless, but scary.

You need to let the rheumy know about plaquenil causing tummy troubles. There is other drugs out there to help.

You don't need to take so many pain killers. Obviously, it's dangerous for you. Ask your doctor to give you something stronger to limit possible overdose.

You might want to see a therapist for you anxiety issues. Many people have to go to them to help deal with the stress of chronic illness. I go myself and it helps a lot.

Sorry you have to be here, but we're glad you found us. We're a great support here and have great shoulders to lean on.

Hang in there, honey.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 10/7/2014 9:01 AM (GMT -6)   
Plaque il can bother your stomach till you body acclimates itself to it. It can take up to 2-3 months for some Lupies to become comfortable with it, and in my opinion it was definitely worth the wait.

Different drugs help different people. Lupus is not a one-fits-all disease. Work with your rheumy to determine what works best for you. I hope you find relief soon. You're going through an awful lot.
SLE, fibro, renauds, restless leg?

New Member

Date Joined Oct 2014
Total Posts : 2
   Posted 10/7/2014 8:57 PM (GMT -6)   
I certainly don't want to minimize your discomfort, but my experience with prednisone is the side effevts are far worse than the sympton treated. In addition, prednisone never caused my symptoms to relent.

I have decided, if on my deathbed from lupus, I would rather die than have prednisone treatment.

Sound extreme? How does psychotic mania and depression sound? How does premature osteoporosis with osteonecrosis sound? Bones so weak you have spontaneous fractures? Multiple hip replacements all with complications? Cushings? Hypothyroidism, parathyroid disease? Skin so thin, cardboard slashes your arm open?

You may think the weight gain is a bad side effect, that's just the beginning of the story. In addition, once your body is exposed to this drug, the side effects cannot be stopped. Take every other day? Sorry, that won't work either.

Still want to play the prednisone card? Hold out for the big one, til your on your death bed.

Lupus is no fun, but try to protect yourself. Prednisone is not the magic pill its cracked up to be.

New Member

Date Joined Oct 2014
Total Posts : 2
   Posted 10/7/2014 9:41 PM (GMT -6)   
The symptoms you describe, pretty much all them, are what lupus is like. I do want to caution you about using adderall for chronic fatigue: as my first rheumatologist said so well..its like beating a dead horse.

My feeling is that we get fatigued for a reason..we need to slow way down to accommodate the lovely features of lupus. When I was diagnosed, I was so weak and tired I could barely take care of myself. Showering turned into a big deal. Impossible to clean house, dreaded all day the thought of picking my son up from school. Preparing dinner? Let's just say we ate a lot of fastfood.

A couple of years later, the fatigue subsided. Everyone is totally different with lupus manifestations. I had thought myself lucky to not have organ involvement. However, under the facade of apparent health, lupus started its quiet destruction.

I decided my life would not ruler by lupus. Why? There is no effective treatment to stop the diseases progress. Treating symptoms is all one can do. I went a good 10 years without reading about lupus. Guess what. I didn't miss out on anything.

My point? Live your life to the fullest extent, don't feel sorry for yourself. Its better to be admired for bravery than be avoided because you're such a downer.

Exchange thoughts and ideas on a forum like this..but remain positive. Stay away from toxic people.

We need to help each other out. Everyone should have positive thoughts to share.

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 10/7/2014 11:09 PM (GMT -6)   
While I agree that the side effects of prednisone can be awful, I'm convinced that it's what helped me get better. And I mean much better. I wonder if I would have been able to get out of bed and tolerate the pain I was in if it had not been for prednisone. I took it for years. One as much as 60 mg daily for 3 months.

But don't take my word for it. That's what your rheumy is for and he or she should be able to give you the pros and cons for your personal situation. Good luck!

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 10/8/2014 8:06 PM (GMT -6)   
"There is no effective treatment to stop the disease process".

UNTRUE!!! Many of us find remission thru some combination of treatments, situations, and medications. There is HOPE. We don't always know what has put us into remission, or a place where our lupus is "quiet", but many of us get there.

Plaquenil, prednisone, Imuran, Cellcept, MTX, and many other medications exist to treat us.

And by remission or "quiet" -- no medications at all for over a year for me, as well as 2-3 years with only Plaquenil. Before that, I had lots of blood markets showing the Lupus was active and inflammation and other effects rampant. Cellcept knocked my Lupus out of the picture.

No, it doesn't happen for everyone, and yes, it's good to keep a positive attitude, but there are many options available and the situation can be managed when you have an active, interested, and knowledgeable rheumy on your team.

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 10/8/2014 11:28 PM (GMT -6)   
Prednisone can be VERY toxic and used long term yes, it CAN or CAN'T cause of the listed side effects. However, I like Patty wouldn't be able to function w/o my prednisone. I've been on the stuff for almost 15 years now, and NEVER been on it below 10mgs for more than 4 weeks. The highest I've ever been on it is 100mgs daily for 3 weeks.

I have loads of organ involvement and w/o the prednisone I would bet that I wouldn't be writing this post right now. Yes, it's great to try to be positive and have a great attitude but we're not all the same and some of us flat out need prednisone and a place to vent away. It's hard to hold all our feelings in, lupus is a tough disease to live with.

I know with my lupus my lungs and heart are so badly attacked I've been on oxygen for 6 years now and am on oxygen at 3 liters. Been at these numbers a long time, I can't breathe w/o my prednisone, I don't care that I have a moon face, that my ribs are breaking because of my osteoporosis, my buffalo hump will never go away, my skin is so thin that you can see my blood vessels thru my skin. I look like I've been beaten over and over again. However, I can breathe with that prednisone and trust me feeling as if you're suffocating it's a terrible feeling and a terrible way to go thru life.

I've taken all the medications and in the beginning it helped me, now I just don't respond to any medications but the predisone. Yes, I've developed leukemia along with my lupus and RA, but that's okay. This is the card I've been dealt in life and I make the most of everyday. I remember to tell those I love that I truly love them everyday. Most of my days are bad and my pain is never ending, but I don't lay around in bed feeling sorry for myself, I get up and do what I need to.

I agree that you can go into a quiet period, I was in one for about 4 years straight, then I started flaring again. You need to have a great Rheumy that is willing to be opened minded about all options available to you. You need to be open to possibly seeing a therapist to help with your chronic pain and depression if you have those issues. Lupus is known as the disease of 1,000 faces. None of us will present the same totally.

I say see your Rheumy and if things don't go great between you and your doctor. Then try a different one until you find the right fit. Sometimes we can go thru several Rheumy's before finding the right fit. Keep a journal of your pain levels, where is the pain at, and the symptoms you're having. Take photos of rashes you have or get it will help your Rheumy. Rest and exercise is great for you, just don't overdo it. Always, listen to your body and rest when it lets you know that Yoshi need the rest. Trust me you'll know when your body is talking to you.

Don't lose hope and have a ton of despair, lupus isn't a death sentence. It used to be but Dr's have made a lot of progress with treatments for us. If I can answer any questions for you regarding prednisone just ask away. If you have any about any of the potential iimmunosuppressant drugs out there, I've taken them all, but Gold Injections.

When you're down and feeling bad, come here and vent. We all do it and we all support one another. We all understand what you are going thru. I'm sorry that you're miserable and in such pain, hopefully your Rheumy will get you feeling really better really soon. Welcome to the forum and we're here for you.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 21, 2018 1:13 PM (GMT -6)
There are a total of 3,005,474 posts in 329,227 threads.
View Active Threads

Who's Online
This forum has 161775 registered members. Please welcome our newest member, Rawle.
271 Guest(s), 9 Registered Member(s) are currently online.  Details
SoMuchFun, JayMot, JoHnGaMeR90, browntrout, Anitas, Girlie, Q22, dogsblood, straydog