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Diagnosed yesterday with SLE

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Posted 9/14/2007 12:31 AM (GMT 0)
Hi,
I'm fairly new to Healing Well. I've been popping back and forth between Fibromyalgia Forum and Lupus Forum for awhile reading posts. Yesterday my rheumy diagnosed me with Lupus. I guess the only surprise is that a rheumy has FINALLY diagnosed me. I've had a Ortho Surgeon and my PCP but the official diagnosis came yesterday. I've thought for years I've had lupus.

I've had a consistently high ANA for the last three years; right now my ANA is 2,306, and my Sed Rate is 26. Yesterday my rheumy drew blood for a few tests. He mainly wants to see if I have any organ involvement. If I do he said something about putting me on Imuran and a low dose of Pred. Yesterday he said based on my symptoms and that I had 4 of the 11 on the lupus list; but does that change if the specific lupus tests come back negative? Here's the tests he ordered: Anti ENA, Anti Cardiolipin (?), Anti DSDNA, Lupus Anticoagulant, Sed Rate, Creatinine, C3 & C4, CBC.

Is anyone on the forum on Imuran? How do you feel taking the drug? Is it pills or injection? Does life go on as normal while you're on the Imuran? Also, I'm back on the Plaquenil and my intestines do NOT like it! Is there anyone else who has this problem with the Plaquenil? Any suggestions would be appreciated because I can't keep on like this!

I've haven't worked for the past three years because of the lupus, previous to that I worked part time as a bookkeeper for 24 years for a sign company. What's my chances of getting on disability now?

Thank you for any input and hopefully I will be able to return the favor by contributing to the forum.
Posted 9/14/2007 12:50 AM (GMT 0)
Hi Gidget!!

Welcome to the forum sis!! I'm so sorry you are dealing with so much. It is a mixed blessing to finally receive a dx. Part of you feels validated for all the symptoms you have and a relief that you will finally be getting treatment targeted against a specific disease . . . and part of you mourns for the loss of a normal body and a normal life. Allow yourself to go through this period of mourning if that happens.

If you make a separate post with the word Imuran in the title, you'll get more responses about that. I've not taken it (no organ involvement) so I can't help you there.

If you have 4 of 11 criterea your dx should not change but they may find additional problems like sjogrens or other secondary issues. The anti cardiolopin is a good thing to check for because it causes sticky blood and the doc needs to know if you need treatment for that (blood thinner).

The plaquenil may be better tolerated if you always take it with a meal. Start eating your meal, take the plaq and then finish the meal . . . kind of hiding it in the food. If you are taking two tablets each day, take one in the morning and one with dinner. If you just started taking it, you might want to get permission to start with one pill each day for a week or so and then add the second pill after your body gets used to taking one.

Welcome to the forum . . . I hope you make some good friends here. This is a great place to get information, vent, and find other people who understand your issues.

Blessings!
Posted 9/14/2007 12:52 AM (GMT 0)
OH . . . and click on the links at the bottom of my signature for more information. The second topic in the forum "Lupus Resources" contains some good info too. One of the posts there is a compilation of suggestions from all the members.

Blessings!
Posted 9/14/2007 2:50 AM (GMT 0)
Thanks AlwaysRosie, I'll check out the Lupus Resources. I have taken Plaquenil before and it seemed to bother me a little less than it did today. It hits my stomach hard and I do have to eat with it. My stomach did better taking my two pills in the morning than at dinner time, today I it seemed to bother my stomach as well as my intestines. I guess I'll just have to try a taking it a few different ways to see what works better for me. At least the nausea didn't last long!

Question: Can you still have lupus with a negative dsDNA?

Thanks again!
Posted 9/14/2007 3:33 AM (GMT 0)
Yes . . . you only need 4 of 11 criteria for a lupus dx. There is a link at the end of my signature for the criteria.
Posted 9/14/2007 2:12 PM (GMT 0)
I did not hv any problem when I took Plaq. As others had said, take w/food. Also, u can take it w/some stomach pills. I myself cannot tolerate Imuran, but again, I am also a rare case, one of a few. I had serious sign effects that need to be hospitalized with Imuran.
Posted 9/14/2007 6:32 PM (GMT 0)
Welcome to the forum, Gidget. I'm so sorry that you have a diagnosis. I well remember the day I got my diagnosis and I must admit that I felt so much relief after being dismissed by doctors for so many years.

It took me several weeks to completely adjust to plaquenil and the diarrhea and stomach cramps it gave me, but once my body became acclimated to it, I've had no problems with it. For me it was worth going through the discomfort for a couple of months.

Good luck with your meds. I'm so glad you're here. The people here are wonderful, supportive, knowledgeable, and very helpful, so come often and ask questions, vent, gripe, and complain all you want. We're all here for each other.

Pat
Posted 9/14/2007 8:43 PM (GMT 0)
PattyLatty,
Thank you so much for the warm welcome, everyone is so friendly here! It's good to know that maybe I won't have to deal with side effect forever!


Thanks again!
Gidget^
Posted 9/15/2007 1:22 AM (GMT 0)
Hi Gidget. I take Imuran and have had no side effects. I take 50mg twice daily. I don't honestly know how the dose is determined and what the average dose is. God luck and God bless, Judy
Posted 9/15/2007 4:48 AM (GMT 0)

Hi Gidget,

Welcome to our group, I'm glad you joined us. I am one of those people who has at least 4 of the 11 criteria, but other than a postivie ANA all my other lupus labs come back normal. I was given a quick diagnosis though because I have kidney involvement and lupus nephritis showed up on my kidney biopsy. I also have a wonderful nephrologist and rheumatologist, both of whom realized I did have lupus even though my labs didn't indicate it. Most people with kidney involvement have anti-DSDNA but I do not. So to answer your question, yes you can have lupus even without positive labs. Feel free to ask any questions, we answer the best we can and there are no dumb questions. Hope your stomach is feeling better.

Sandy

Posted 9/15/2007 2:47 PM (GMT 0)
Hi Gidget, I also wanted to add my welcome. It is kind of a relief to finally get a diagnosis after being sick for so long. It took me several years and several rheumies to finally get a diagnosis and once I got my diagnosis I felt like we could finally move forward and start to really treat my symptoms. I hope the Imuran hels - I've never been on it, so I can't help with that. As I'm sure you can tell, this is a great forum with lots of wonderful and very supportive members. I know that coping with this disease would be much more difficult if I didn't have this wonderful group of people. Please ask any questions you have and know that we are here for you whenever you are going through a rough time physically or emotionally. Take care
Posted 9/17/2007 2:01 AM (GMT 0)
Thank you everyone for the warm welcome. Yes, it is a relief to finally get an official diagnosis. I was beginning to wonder if there was a doctor out there with an open mind. Funny, I had made an appt with this rheumy two years ago and canceled it because of the things I had heard about this doctor. Then my PCP and Ortho wanted me to see him so I gave in. My PCP said you need to know he's very short and to the point, you may not like him. LOL I loved him! He is the first doctor in my entire life that has said you have such and such ... what would you like to know about it? If that's short and to the point I'll take a doctor like that anytime!

What I find now is coming to terms with the diagnosis because it hit me the other day when the doctor started testing for organ involvement.

Again, thank you everyone! It's nice to know that I'm not alone.
Posted 9/17/2007 3:45 AM (GMT 0)
Hi, Gidget and welcome. I know I had a difficult time when I was first diagnosed with lupus. If you're like me, you have no idea of what lupus is and it's kinda overwhelming. Please do take a look at the article I gave a link to in a reply last night to Editor in her "Just diagnosed" thread. That is a great article on how to cope with a chronic illness. Let me know what you think. Please remember you are not alone. Take care,
Posted 9/17/2007 7:22 PM (GMT 0)
I wanted to add my welcome to you as well Gidget. :-)
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