meds?

[jaime denise]

first of all i would like to say thanx so much for beint so supportive of me. my family is still not being supportive, in fact my mom doesnt even think i have sle at all. she thinx my doctor is stupid, so i told her to just deal with it cuz i have alot of the symptoms. what kinds of medicines are you guys taking for sle? my doctor didnt give me any, he said he can only give me steroids if it flares, and i can take vitamin d and calcium supplements. i dont really feel sick, im just really tired alot :yawn: . my back does ache a little most of the morning when i get up and then before i go to bed at night. my stomach has not been feeling normal lately. i dont know if it is from stress or what. but like ever since i was diagnosed (on friday) i have really been aware of all the wierd things my body has been doing, like when my hands get sore when i dont move them, and little things like that, i never really noticed them before. is that normal? well anyways i guess im just new to all this stuff so i appologize in advance if i drive you all crazy with all my questions, i just dont have anywhere else to go. thanx again for everything, i am so thankful i found this site. God bless!!! :D

~*~ Jaime :wave:

[AnM]

Hi Jaime & Welcome to the site!!

Are u seeing a rheumatologist?? If not, u should.

& If u are, does (s)he specialize in Lupus? Not all rheumy's (rheumatologist) specialise in Lupus. To let u know. But, those are the doc.s we see.

Usually the standard med. for Lupus is Plaquenil- an anti-malarial. It is a Very safe med. w/ little to no side effects. & helps w/ the illness, the symptoms- including the fatigue, etc., an helping w/ the illness not progressing.

There are different meds. they use, and they have come a way, w/ meds. for Lupus.
But, this is all individual, what meds. are needed, and whatnot. so, this is something to discuss w/ a rheumy who specializes in Lupus.

We understand the questions, it's good to learn all u can. So, don't worry, n ask away. We will help as much as we can- which comes from experience n what we've learned, but we are Not docs. :)

The front of this site, has a LOT of info. u can go there n read that; that can help a lot in learning. & that is very important.

Take care,
Alicia :coffee: :flowers:

[alobreto]

Hi, Jaime! ;)
The prior post is absolutely on target!

The only thing I can add is that just because you have a diagnosis of lupus, it doesn't mean that EVERY symptom you notice is a result of lupus. It's easy to fall into that and not be treated appropriately when non-lupus illness/symptoms occur. Sometimes, even the docs can fall into that trap.

A good rule of thumb is to have ANY NEW symptom investigated, identified if possible, and appropriately treated. Once you've done that, you'll be better able to make an informed decision should that symptom happen again.
Best regards,
Angela :flowers:

[redrose77]

Your doctor sounds like he is reluctant to treat you. The thing is that lupus does damage when not treated. Plaquenil is one of the safest drugs available- my rhuemy told me that and said she sees no point in allowing disease progression or suffering when it is so safe. You need an eye exam to make sure that the one possible side effect- so rare that it hasn't been seen by the local eye doctors and apparently there are thousands of locals on plaquenil- doesn't happen. That side effect is build up of the drug on the retina and can be fixed by stopping the medication- if regular exams are done (1-2xs a year) it will be caught before permanent damage can be done.

You need to see a lupus specialist and also listen to the others who posted- not everything is lupus related. I have back pain but it is from fractures not the disease. Have the pain looked into. Your body is trying to tell you something with the pain.

[raggedyann1]

Jaime,

Some rheumatologists, even lupus specialists, still use an old way of treating the disease. Yes steroids are best used only when disease is flaring up. That is current treatment practice, to minimize steroid use if at all possible. The rest of the treatment used now is aggressive treatment up front and then back off. So that is usually plaquenil up front and often an anti-inflammatory to help with pain. Plaquenil can take 2-3 months to kick in and 6-9 months to reach full benefit.

Many of us drive a couple hours to see a true lupus specialist. Some here are fortunate to live close to their rheumy and still feel like they are getting good treatment.

Can you ask your GP to refer you to a 2nd rheumatologist for a consult? See what treatment another rheumy would use in treating you.

Let us know how you get on.

Take care,
Karen

[Katina]

Hi Jamie my name is Katina. I was just diagnosed with lupus about a year. My family is not to supportive of me either. I go to a doctor in Atlanta. He has helped me alot. But, like you I can barely get through the day. I hope you get to feeling better. May God bless you. :flowers:

[helloos]

Hi Jaime. I haven't been diagnosed yet, in the process....I could be wrong, but maybe because you know you have this, you are paying attention to everything in your body? You will know if you need something to be looked at and I agree with everyone else you must get a specialist for it. I go in two weeks and see. Good luckand hope you feel better....

[Clare.T]

It doesn't sound as if your doctor is taking a holistic approach which means considering the effect of the disease on you and your life and seeking to improve it.

Do all you possibly can to get a more concerned doctor who listens.

Plaquenil is no more harmful than many OTC meds even less because you will be checked for the few possible side effects. It can make a great difference and has many beneficial effects on top of being disease modifying.


It can be hard to tell what's lupus and what's not.

Good Luck

Clare