View Full Version : we have Lupus
08-20-2006, 05:47 AM
Well, I saw the rheumatologist friday and got the news. Yes, I have Lupus... and rhumatoid arthritis. I am a bit disappointed with the doctor. He just does not communicate very well. It was like "you have lupus and rhumatiod arthrits. Here is a prescription. Come back in six weeks. " I did not expect him to sit and wring his hands and say "poor you",or anything, but a little 'this is what you can expect, this is what you should do, this is what you should not do' type of education would have been nice. For example, I am not sure why the double diagnosis. Doesn't lupus affect the joints like rhumatoid arthritis? So why both? My husband was furious and wants to start looking for a new doctor right away. I think I will call the nurse and see if I missed some literature they usually give newly diagnosed people or something. I am glad I found this site, or I would really be in the dark about what is going on. On a brighter note, the med he put me on is Plaquenil. As most of you already know, it is used to treat lupus, rheumatoid arthritis, and malaria. So, I can still get malaria and be good to go :P Seriously, I am glad to finally have a reason to have all of the pain (and all this time I thought I was just fakeing it), and even more glad to be getting started on something to treat it.
Thanks for the rant
08-20-2006, 06:20 AM
Welcome to our family! :BIG: Yes, it is important to have a doctor who can explain to you what the illness is, what exactly is happening to your body and why, what symptoms to watch for, etc.. I musta been lucky to find the doctors I have now. Both my rheumatologist and nephrologist take their time to explain what I should expect with the lupus diagnosis. Most doctors probably spend less than 5 minutes with the patient each visit. But my doctors take their time to answer all my questions and concerns. They even take their time to go over the test results, what each number and figure means. :) Also, for each blood test I have, my nephrologist personally takes his time to call me and explain how my bloodwork went.
Hope you'll find a doctor who is more caring and sympathetic. Its scary not knowing... So, I'm glad you joined us here. I've learned so much about lupus from everyone.
Welcome again. Feel free to ask questions, vent out your feelings, or just want to talk. You're not alone... :wink:
08-20-2006, 08:17 AM
Where in Illinois are you? I live in Illinois and I have a wonderful Rheumatologist and he does take the time to talk etc. I could give you his name if you are anywhere near his office.
08-20-2006, 03:38 PM
Thanks for the support! I am near Rockford. Any suggestions for a good MD are very welcome and appreciated.
09-17-2006, 06:36 PM
OK, my next rheumie appointment is in about 2 weeks, and I am trying to prepare. I know I need to write down my questions, or I will forget everything when I go in to see him. And, if I don't have specific questions, I anticipate the visit to go something like ...
doctor: you are still alive. me: uhhh, yes. doctor: come back in 6 months. me: uhhh, OK.
So, I am looking for ideas and suggestions about some of the questions I should ask when I am there. Some of the ones I have come up with so far are..
-What is my diagnosis? MCTD and Lupus and RA, or just MCTD, or just Lupus and RA
-what course do you expect this disease to take, and how do you plan to treat it?
-What symptoms should I be concerned about? If I am having symptoms,or get sick should I call you (the rhumie) or my GP?
Any suggestions would be appreciated.
09-17-2006, 07:59 PM
Since Lupus is so different for each of us and since it even changes within each of us, he may not be able to tell what course he expects your illness to take. However, you can ask him what treatments he intends to start you on and what symptoms are those treatments for. Also, ask about the side effects of any medications he prescribes and which side effects would need to have his attention.
Don't forget to let him know what your symptoms are now (and list all of them, even the ones you may not think are related to your illness). Stress those symptoms that cause you the most pain or malaise and stress that you'd like him to treat you for those even if he does not have a diagnosis yet!
The rest of your questions are very good and should get you much needed information!! Let us know how it goes!!
Peace and Blessings
09-17-2006, 08:36 PM
You are wise to follow your instincts; and believe me, I've gone through a few rheumatologist till I found one that would SIT DOWN and listen; not just talk but actually listened to my concerns.
I hope this is okay with Saysusie and St. James, there is this website that I found that helped me out alot when I was going through doctors; now I see a rheumatologist, nephrologist, cardiologist, neurologist, enterologist...and I'll stop there. So now you know, I've had a little experience with the doctors.
I think this list will get you started; also - I ask that everytime I have lab work done, that they send me a copy of the report; that way when I see something unusual I can ask the doctor to explain it to me. Always remember my friend; this is your body and your care - you ask the doctor if he/she is willing to answer questions; explain therapies; explain that you NEED to be a part of the decisions that go on - on your behalf.
My doctor wrote a book entitled, "But You Don't Look Sick"; it has been so helpful for me and I have given copies to my friends and family to read. It helps them understand how lupus affects your body; because so many of us "look normal" on the outside, they don't know how this disease deteriorates the inside. My friends now understand much better about my limitations.
My friend, please don't stop until you find a doctor that you and your husband are both satisfied with. Remember, that doctor isn't the one who will be there in the middle of the night when you're hurting and you don't know why. Whomever you chose; make sure they are willing to take time and ask upfront about an initial support group that will be "positive" and as Saysusie said, this disease affects everyone differently. On Good Morning America, the spokeswoman described lupus patients as "snowflakes" - no two are alike.
Always, always follow your instincts. You'll never go wrong. There are so many wonderful people here with much more information than I; please stay close and keep us informed. We love having you here.
You will be in my thoughts and prayers.
09-17-2006, 08:45 PM
oooops, if that doesn't work let's try this:
10 Important Questions to Ask Your Doctor About Lupus
1. Could any antibiotics or other medications I'm taking be triggering my lupus symptoms?
2. Could another condition be causing my symptoms?
3. Has the disease already damaged my kidneys or other organs?
4. Should I have a bone density test?
5. Should I be taking calcium or other supplements?
6. What are the possible side effects of my prescribed medications?
7. How long will I need to take these medications?
8. Is it safe for me to become pregnant?
9. How often should I have checkups?
10. What lifestyle changes do you recommend?
Hope this helps - please feel free to ask anyone here - there are some extraordinarily helpful people here.