View Full Version : Just diagonosed

05-17-2007, 01:44 PM
Well i've had the suspicion of lupus for a couple of months now, and I was just diagnosed with it this morning.

I can say that i'm a little dissapointed, the Rheumatologist asked all my symptoms, did a self examination and then told me I had Lupus, and quickly wrote me a prescription. She basically acted like having Lupus was nothing, and sent me out the door and asked me to come back in 3 months to see how the meds are working.

She also told me "don't go on the internet looking it up" like what? what kind of advice is that? you tell me I have some disease but no, don't get involved and research it.

She never told me to wear a stronger sunscreen when I told her how the sun made me feel, or that exercise can help, and make sure to get lots of sleep.

She seemed really cold the whole time she talked to me as well, I don't know.. maybe she was in a bad mood or something because the day before she seemed a little nicer talking to me.

I'm really depressed, and I don't really know how to handle this. This disease causes me a great deal of pain and puts a lot of restrictions on my life. I feel bad now taking an interest in Lupus, and wanting to get involved. I feel like I should be ignoring everything and treating it like it's nothing.

05-17-2007, 02:17 PM
i think i would be marchin my but back in there and askin her what kind of doctor she is, the least she should have done is try and explain the disease to you, as far as the comment about the internet, who the heck does she think she is, it is a patients right, if not responsibility to educate themselves on the diseases they have,
i sincerly hope you have options with the doctors you choose

out of curiosty what are the meds???
and as a added note, may 07 is the first thirty day period that i havent had a drs appt in over a year and even then i snuck in and saw my pcp and got phone calls from my rheumy and thats veterans health care

05-17-2007, 02:20 PM
Hi Sary, and welcome :)

I don't know what is "up" with your Rheumatologist--you said she isn't usually like this, so for the sake of optimism, let's just hope she had a bad day...

I think that some doctors act like Lupus is "Nothing" because they are at such a loss over how to "treat" it. It is such a tricky illness, and some doctors are even hesitant to give a diagnosis at all. (It took my doctors over 3 years of definite symptoms and positive ANA's to finally give me the "title" of Lupus patient.)

I know why she says to avoid going to the 'net. She doesn't want you to freak out--LOL! I mean, I remember once when I had strange bloodwork and all kinds of things... the doctor ran some specific blood work, and told me not to go to the 'net and look it up (he said it with a smile, and with reassurance, though...) Of course, I did, and found out that he was doing cancer testing on me. Well, of course that freaked me out--and for no reason, because they were negative, and the way that the testing turned out, it reaffirmed a malabsorption problem in my intestine. (Hello--can we say "LUPUS?" hahaha)
Each new doctor that I run across tests me for AIDS, too. Now, talk about freak out time! My ex husband was a philanderer and when doctors come to that conclusion so quickly, it's really scary. So they run the test (and they have to tell you because you have to sign a release), and I have to wait for a week before the results are in. Now, during those days, guess where I am--yup, on the 'net, freaking myself out. haha. (and they were negative--each time--but each time they test again, I freak out just the same...)
So, she is just trying to keep you calm, and NOT focused on the illness.
With a diagnosis after only 2 months of possible symptoms, she might be hoping that it isn't really Lupus, too. So, why worry you if it's not 'really' this? I don't know. But whatever you do, don't go to these Lupus sites and automatically think you're going to have every symptom all of a sudden. Lupus manifests itself very differently in each person.

(Kind of like Proverbs 31... If you read it as a check list of things a woman/wife is supposed to do... then you'll be overwhelmed with the expectation and "superwoman" standard. If you understand that it is a list put together by a bunch of men who were giving the attributes of their various wives collectively, then it paints a whole different picture...)

Stronger sunscreen might not be a help to you... many people flare up with sunscreen or not. Exercise may not help--exercise will cause a flare for me. Now, the lots of sleep is strange--but she might want to see if the meds can take the edge off and allow you to sleep. (How do you sleep? Is it a broken pattern sleep? Or do you sleep through the night?) Perhaps she thinks because of the symptoms you list for her, you don't have a sleep deficiency... I don't know...

Don't allow yourself to be depressed. Take it one day at a time.

What are your symptoms? What meds did she put you on?

Instead of worrying about the "what if's", try to deal with the "what are's". And listen to your body. If you feel like you need extra sleep, then get it. If you feel like you're getting depressed, then find a way to get out of it. If you feel like exercise will help, then try it in moderation. I don't think your doctor wants you to treat things like they are nothing--I think she wants you to focus on "life" and not get wrapped around the axle about things that other people experience.

Just because one person experiences one thing doesn't mean that every Lupus patient is going to experience it.

My doctors, when they get confounded, seem to act distant or distracted... It drives me nuts. But after all of these years, I know that they are just upset because their desire to "fix" me isn't happening like they'd like. They are disappointed in themselves, not me. I have to remind myself of that from time to time.

Maybe you can keep a journal about how you feel each day. List the things you eat and do--and see if any of these trigger a flare up. This will be very useful for you and your doctor in the future.

Good luck, and welcome,

05-17-2007, 02:37 PM
Now i must retaliate

against myself, of course over doing on the internet can be harmful, many people read to much into the problems they have,

and im sorry for being so harsh on your doctor, it just really irks me when people dont get the care they deserve and pay for from an individual that gets paid well for doing it.

when my rheumy DX me, i sensed he didnt know what he was doing, since then he must have been educating himself because hes been coming around nicely

I ask about the meds because some meds should be watched more closely than three months

what was that?? a prednizone rant :mad: :mad: :mad:

05-17-2007, 02:46 PM
She prescribed me 200g of Plaqenil (hydroxychloroquine sulfate) eto take twice a day weekdays and once a day weekends.

She did say not to go looking up on the internet so I don't get myself paranoid, but still, I feel bad now researching it more and being apart of this forum.

05-17-2007, 02:56 PM
dont feel bad about it!!! just dont read TOO MUCH into it, as in dont scare youself about it, yes i know its scary, it scares me too and im a big tough man, but it makes me feel helpless, the name of this forum is wehavelupus and since finding it, i feel better about myself just being able to talk to and see how other people cope with it,

obviously you had this on your mind for awhile, sometimes your mind needs a break, do something that you enjoy even if just for a short time

pssst(he says in a whisper) chocolate works for me

05-17-2007, 04:11 PM
Don't feel bad for coming here-- this is a safe place to ask questions, etc... but don't allow yourself to overdo it--I mean, if you find yourself sitting at the computer, printing out hundreds of pages, ordering books, and finding hours and hours passing by, then you're overdoing it. Information is good, but it's also detrimental--if you don't have a symptom, you can always manifest it with suggestion. (ie. if you read that memory loss is a common symptom, you might stress yourself out and cause yourself to forget things--and "aha!" memory loss". Same with aches and pains--stress and suggestion can also manifest those...)

I am curious as to why she lowers the Plaquenil on the weekends--has anyone else had this prescribed?

I'm on 400 plaquenil every day, and every few months doc ups it to 600 for two weeks or so. I'm trying to avoid the 'next step' drugs.

Stick around, Sary--don't feel like you're unwelcome or that it's "bad" to be here. It's good that you're looking into the "support" part of the illness. I have been diagnosed for many, many years, but have yet to look up the details of my illness... I call it my "ostrich" syndrome, but it has helped me to keep from worrying. ;) My husband spends more time looking up "stuff" than I do--by far.

If you have any questions, feel free to ask :)
As far as your Rheumatologist suggesting you stay away from the 'net about this--I think she told you that for your own good, to keep you from looking up scary sites that only deal with the most extreme cases. Some of those sites make it sound like those extreme cases are the "norm" when they most certainly are not.

05-18-2007, 09:24 AM
Sary, I think you have to find a healthy balance between being informed about your illness, and scaring yourself to death by learning about every possible symptom and complication of lupus. And much of the information on the internet comes from commercial sales sites that are trying to sell you a magic potion or a "cure" for lupus - which may be another reason your doctor want you to be leary of the internet. It can be hard even for someone with a medical background to sort out the real information from the hype and the hysteria. That's why a forum like this can be a good "filter" - a lot of us have been dealing with lupus for a while - we don't try to sell or promote anything - and hopefully we can provide both solid information and reassurance.

When you read about every possible symptom or manifestation of lupus - it can be terrifying. But lupus is a very individual disease - no one person will have every single symptom or diagnostic criteria. I have neuro and kidney involvement, but no skin lesions other than a malar rash. My brother has lupus too - he has skin lesions and a lot more joint involvement, but no neurological or kidney problems. He is not photosensitive even though he has skin lesions- I am. He feels better in hot weather - I feel worse. The point is - I can't predict the course of HIS disease by MY symptoms - and neither can anyone else. So it's fine to read about other people's experiences, but don't be afraid that everything you read about is going to happen to you.

05-18-2007, 12:08 PM
When I found out I had it I was pretty okay with it, I actually took the day off work though just so I could relax and take my mind of it.

I figured they were going to diagonose me with it anyways, I had already read about it previously when a friend of mine told me she had it, so I looked it up just so I could understand her illness. Didn't ever think I was going to get it though heh.

I think if I stay on my medication and get regular checkups i'll be okay. It's not involving my kidney's although I think I could possibley have an inflammation in my heart, which the docter discussed with me. I have a good feeling everything will be alright though.

I do get scared now and then though, that the disease will manifest and I won't be able to do the things I enjoy. Like nursing, I want to be a nurse but i'm really worried that the lupus will interfere and disable me.

05-18-2007, 07:01 PM
If you can, try to keep a positive outlook on it and take it one day at a time. That works for me (sometimes :? ) Somes days are better than others!

05-18-2007, 08:29 PM
I have an example why a doctor wouldn't want you to overthink a possible lupus diagnosis:

I have a neighbor who has "possible" lupus... she is changing her WHOLE life to accomodate this new "death sentence"... she is literally getting rid of everything--cars, house, everything. She's moving from her lifetime home (thinking it will make her better to move), and exhausting herself with stress.

I am not even convinced she has lupus. She has no "typical" symptoms outside of fatigue. (She just got over a longterm unrelated illness, so that's normal.) Her doctor made the "diagnosis" with no bloodwork, and only one office visit.

I love this person and her family with all of my heart, and it is so sad to me to see her throw everything away... I know that if it is indeed lupus, none of these changes will mean anything anyway... so she'll look back in retrospect and regret it.


So, I can see why a doctor would ask you to avoid overthinking this possibility...

Keep smiling :)

05-20-2007, 09:36 AM
Hi Sary,
Don't let anyone ever tell you to not learn all that you can about any subject that is important to you, especially one that is this important. I'm a teacher, and so I was trained in college to do research. I ALWAYS research everything very carefully. When I was pregnant with my first child, I very carefully researched pregnancy, childbirth and breastfeeding. A few years and a few babies later I was a midwife's assistant and a La Leche League Leader. I LOVED educating other Moms. Knowledge is power, and if you understand what is going on with your body, you won't be so fightened and vulnerable and will be able to play an active role in your health care. This was true in maternity care, and I'm sure it will hold true in care for Lupus.
I'm newly diagnosed also, but I've been reseaching everything that I can find out about it. Even a couple of my students who have dreams of being doctors have been researching Lupus since I mentioned it to them. Who knows? Perhaps those two will find a cure or a great treatment for Lupus out of love for their old Latin teacher!
Keep learning and don't feel guilty about it.