Aa
Aa
A
A
A
Close
Avatar universal

does it have to be lupus?

My husband was diagnosed with lupus in March.  He had been very tired, sore muscles, has had bad back problems.  OK, there were some tiny sores on his head.  He sometimes has a BIT of a butterfly rash on his face- generally only after a hot shower.  BUT, life had been incredibly stressful.  I had been sick ( 4 heart surgeries).  He had been  very stupidly and unjustly fired probably right out of his profession (being a pastor).

He went to his PCP.  When his carbon dioxide level was high (?), they did some more paperwork.. his doc called and said... "you have lupus".  Three months later, he saw a rheumatologist who started him on plaquenil.  I figured it was mostly depression.  In fact, I hoped so really.  If it is so hard to dx lupus, how do they just give a big dx so fast and so flippantly.  Does it have to be lupus?  Is there any other better choices?
9 Responses
Sort by: Helpful Oldest Newest
354604 tn?1328552066
I am not aware of any better choices with his symptoms but hopefully the plaquenil will help! Too bad he had to endure 3 months before he got to start taking it.
Who knows why some doctors manners are so lacking!
I'd bet most doctors don't see the rashes inconjunction with the joint aches. And I believe stress is usually a factor with the onset of lupus, it certainly was with my discoid lupus! Mine came as I overcame another rare disease and was experiencing an intense degree of stress. But you didn't mention if they ran an ANA antibody test for him with his blood work? They also check what's called the sed rate. A high sed rate is indicative of joint, autoimmune, or arthritic conditions, and also lupus.
With your 4 heart surgeries, your family has certainly had a lot on your plate. My best thoughts go out to you and your loved ones ~
Helpful - 0
Avatar universal
I guess they ran the ANA test.  I do not know for sure, nor do I know the results... but it was supposedly some test that is fairly specific to determining lupus.  (I should go with him to the rheumatologist)  I suppose symptoms pointed to it, but seemed odd that with a dx SO hard to pinpoint, it came hard and fast.  No questions asked.  I read your responses to some other questions.  Sounds like they withdrew your dx for reconsideration?  I am rather hoping that will happen for my husband.  There are so many other things that would be simpler to deal with.  I am still hoping...
Helpful - 0
679575 tn?1245115450
Not all dx's take a long time.  I was dx'd in less then 3 months from the start of systems... my first systems were quite severe and could have killed me if I hadn't gotten to the emergency when i did so they worked pretty fast to find out reasons as to what was going on.  I also had a very proactive family dr.  Though it is always nice to consider the possibility that the dx is wrong I am so glad they figured it out sooner rather then later.  It saves so much time and energy put into tests and never mind the stress of wondering what is going on with you.  It is all very scary at times but it is better to know so it can be properly treated sooner.  I could not imagine what these poor people who had to wait 10 years or more for a dx went through.  I was freaking out just waiting under 3 months.  I wouldn't wish that wait on anybody.  The frustration would be enough to be in a permanent flare.  I just thought that I would share with you that a fast answer is not always bad or wrong..... But i guess deep down we all wish they made a mistake and all it would take was on little pill to make this nightmare go away.... Take care all
Helpful - 0
679575 tn?1245115450
i meant symptoms not systems in my first sentence... lol
Helpful - 0
434278 tn?1324706225
I have lupus and it has taken them a year and a half for a DX.  I can relate to luppygirl when she said that the stress of not knowing can cause a severe flare!  I thought I was going to die last February (really low BP and heart rate).  Anyway, I also get what looks like a butterfly rash when I shower.  

Some of the common symptoms of lupus are:
feel cold all the time (although you can have an occasional hot flash)
achy joints (w/ swelling @ times)
fatigue
hair falling out
muscle aches
rash and or skin erruptions (mostly where exposed to the sun)

There are 11 criteria for a diagnosis of lupus.  A patient has to have at least 4 of these for a DX.
http://www.lupusresearchinstitute.org/diagnosis.php
You don't need to have all 4 at the same time.

Everyone says that problems always start after an extremely stressful event.  My problems came after my husband fell out of a deer stand, found out he had an anurysm in his ascending aorta.  Then a tornado came through 2 weeks after open heart surgery - left 2 ton trees across our driveway. A month later I became very ill with a sluggish gallbladder, ended up not eating for 4 weeks before the decided to do something.  Needless to say, STRESS was a BIG factor.  

I'm sorry to hear that ya'll had a hurtful situation with a church.  I'm a believer too and it always grieves my heart to hear stories like that.  I'm praying for the both of you.  Praying for God's provision of healing, peace and strength to get you through these tough times.  I am on Plaquinel too.  It has helped tremendously.  It took a few weeks to feel the results.  Diarrehea was an initial side effect, but seems to have subsided some now.  It has given me my life back.  I was in really bad shape before.  

You really need to call either the lab or the dr. office and request them to fax a copy of the lab to you.  And keep a copy in a file.  KEEP EVERYTHING!  If your husband truly does have lupus, this will be a long journey of many highs and lows.  Learn to ask for copies of everything (every lab, every cat scan, everything)
Helpful - 0
Avatar universal
That was the most helpful info I have heard since this spring's dx.

I'm still not entirely convinced that lupus HAS to be it, but it certainly could be.  I looked at that list you connected me to.   I'm still not sure, but thankfully, I am not the one who has to make these decisions.  I just have to come to terms with it all.

Stress, besides being a source of potential for a flare is also related to lots of other possibilities.  Fatigue and muscle pain are very nonspecific and can be related to many things.

When you say plaquenil has helped tremendously... could you elaborate.  HOW has it made a difference.  My husband says he isn't sure if it helps or not.  I have to wonder if some of the way it helps is not too measurable.  ie... I take ace inhibitors among many others for my heart... overall, in the short term, they are more trouble than help BUT it is for the long term protection of my heart than for the day to day.  Maybe plaquenil keeps things from progressing??  Did your diarrhea abate?  My husband has a baseline touchy tummy.  He throws up with minimal stimuli.  I used to take plaquenil relating to malaria.  It always upset my tummy badly.  Eventually, I decided the problems with plaquenil were a daily REAL struggle enough to forego it entirely as opposed to option of POTENTIAL malaria.  Do you eventually end up with problems with your color vision?  How long have you been on it?

Thanks for your insight and info.
Helpful - 0
Avatar universal
I guess it all depends; by the time I got to a Rheumatologist I had 8-9 out of 11 symptoms, and in the middle of my biggest flare I got diagnosed at my first appointment with  the Rheumy. I couldn't do my work anymore (I was a landscaper maintenance), and now I have added several other diagnoses with my lupus, DD, OE, Raynaud's Phenom. fibromyalgia and if one isn't flaring up something else is.

Did you husband have a positive ANA? It does sound as if they diagnosed him fast. Google lupus and read about it, look at all the symptoms; get a second opinion; a lot of times people get diagnosed with lupus and it's not.
Helpful - 0
Avatar universal
I was told you had to have a lot more then 4 because those symptoms can be from something else. There is more then just that list too, a major body organ, like kidney's (if you have SLE like I do) or lung inflammation. It's hard to separate diseases since people rarely have just lupus, because of my work and having SLE I got Raynaud's Phenomenon, which *****, the slightest cold sets off an Raynaud's attack.
Helpful - 0
434278 tn?1324706225
Did you get a copy of the lab reports?

You asked me to elaborate on how Plaquenil has helped.  Before Plaquenil, I was flaring 2 and 3 times a week.  I rarely had a good day.  I couldn't really plan anything for fear of having a "bad day".  Now, I can count on most days being good.  I do have an occasional flare the day after sun exposure.  During a flare I have nausea, diarrhea, dizziness, joint pain (every joint in my body), muscle pain and extreme weakness, fatigue, headaches, confusion, skin rash, skin erruptions, tachycardia & bone pain.  This usually last a day or two.  Before it would put me to bed.  I was sooo weak I couldn't get out of bed.  I wasn't able to function at all.  Everything was so extreme before Plaquinel.  Now, even in a flare, I can at least get out of bed and be a little mobil.  

The tummy symptoms lasted about 1, maybe 2 months.  I started feeling like the Plaquenil was helping after 3 weeks.  Now, there is a chance I was getting over Rocky Mountain Spotted Fever during this time.  My pcp put me on an antibiotic for a positive RMSF test.  I started the Plaquenil about 2 weeks into a 4 week antibiotic program.  Please note that Plaquinel is helpful for people with mild Lupus.  Your husband could need a more powerful medicine.  How long has he taking the medicine.  Also know that Lupus can cause the intestines to have inflamation therefore causing diarrhea in and of itself.  I have periodic diarrhea.  It comes on sudden with very little warning - violently!  Celiac Disease often goes along with Lupus, which can cause diarrhea and joint pain as well.  There is a test his dr. can do to see if this is what is going on.  If your husband started Plaquinel in the Spring, his diarrhea really should be slowed down.  Maybe something else is causing that part of it.

What exactly are your husbands symptoms?  And how many of these 11 criteria does he have?  

Have a very blessed Thanksgiving.
Helpful - 0
Have an Answer?

You are reading content posted in the Lupus Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?