Guess I'll be sticking around

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Mar 2008
Total Posts : 60
   Posted 5/8/2008 4:44 PM (GMT -6)   
I don't know if I ever posted an update after my last visit w/the rheum. doc, but I've been kind of in shock. Eight weeks before, she had thought a vitamin D deficiency may be the cause of my symptoms, which at the time were mainly joint pain and extreme fatigue. She didn't think I had lupus, and neither did I because I didn't have any other classic symptoms like mouth ulcers, hair loss, or sun sensitivity. I did have a malar-looking rash, but also had bumps that made it look more like rosacea.

For those 8 weeks, I was on high doses of vit. D and actually got out in the sun thinking it would help. Rashes started coming up on my arms, but I honestly thought nothing of it...thought it was heat rash because it usually showed up in the shower. The pain was also getting worse, and I was having a lot of nausea and flu-like feelings (though no fever that I know of).

When I went back to the doc in April, she took one look at me and asked if I had been out in the sun. The malar rash was worse and had started welping up at night when I was tired. She saw the rash on my arms and said it looks more like sun sensitivity than heat rash. She asked if I had any sores in my mouth, and I said no, just a little "soreness" but it's not an ulcer, you can't see it. But she did see it and said it's an ulcer.

So now she thinks it's lupus but is still calling it "undifferentiated" (UCTD) for now on the records, which I'm glad for. Counting the fevers and low platelets from years ago, 6 of the 11 criteria are met, but apparently it's still in early stages and all labs are still normal except ANA (which went up from 1:1280 to 1:2560). My vit. D went up from 7 to 70, so at least that's good!!

Anyway, I've been pretty in shock and haven't told anyone in real life except my therapist and immediate family. The doc didn't think I should tell anyone I have lupus until it's actually dx'd officially, but I have to say it is a little difficult trying to deal with this news on my own. It has been hard to even come here and read posts, but I do want to find a "home" forum to stick around, and this one is a favorite because everyone is so nice and helpful and supportive. Just wish it could be less...public. I feel more comfortable when people have to register in order to read any of the posts. But I haven't found a lupus forum like that yet.
~ Bee

God is the strength of my heart! - Psalm 73:26

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/8/2008 4:51 PM (GMT -6)   
Bee, I'm sorry to hear that your doc is pretty sure it's lupus. My rheumy says I have lupus too, but uses the UCTD diagnosis for my records because it doesn't look as bad to the insurance companies.

I am glad you found us though. This forum has been a lifeline for me, especially in the beginning when I first got diagnosed and felt so overwhelmed and had so many questions. I checked out several forums and liked this one the best - it was the most active and I loved the people here. People here are so helpful, supportive, and understanding. It's such a relief to be able to come here and be among people who truly understand what it is like to live with lupus and can relate to what you are going through.

Hang in there and know we are here for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



Please allow HealingWell to continue helping others by donating:


Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/8/2008 6:08 PM (GMT -6)   
Hi Bee,
   I'm sorry your having a hard time with this. It can overwhelm you when you find out but, hopefully your doctor will have a good treatment plan to help you feel better now.
   Like Hippi, this forum has been a lifeline for me as well. It was a true blessing to have stumbled across HW. I have been here for 4 1/2 years now and plan to stick around as long as they will let me..... :-) .
   Hang in there and keep us updated. You will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/8/2008 7:49 PM (GMT -6)   
((((((((( Bee )))))))))

It will take a while to get your brain around this. You are in great company here. And it really helps to come here and post and read. As you have questions, feel free to post here. There are some great posts in the "Lupus Resources" thread (link in my signature) if you have time to read them.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 5/8/2008 8:14 PM (GMT -6)   

I haven't been around much lately but do poke my head in from time to time and when I saw your post wanted to tell you how sorry I am for what you're going through. The diagnosis limbo is something most of us have had to deal with and it's so hard to go through. When we thought I had lupus, but prior to my official diagnosis, I talked to some close friends about it. I had not yet found this forum and when I would look for online support groups I always felt like an outsider, and I had to have someone to talk to. But I never felt like an outsider here and because it's such a supportive group and there are plenty of folks that are as of yet undiagnosed or have other AI diseases. Talking to friends and online were both important parts of my acceptance of this disease. Listen to your doctor but also do what's important for you to do in order to cope.

I second everything my buddies Rosie, Babs and Hippi have said. Hang in there. You can do this.

Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 5/8/2008 10:29 PM (GMT -6)   
Hi Bee,
I'm glad you're here too.  Support is so needed during this early diagnosis stage in particular. I think the feelings of shock are something we have all experienced.  Shock, sadness, anger, the feelings of "what do I do now?"  Let yourself grieve.  It's important to let it all out and go through the stages.  By the looks of your signature line, you have a lot of faith.  Hold onto that, tap into his strength, and let him comfort you.
We're all here for you Bee. 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Mar 2008
Total Posts : 60
   Posted 5/10/2008 12:25 AM (GMT -6)   
Thanks so much, Hippi, Babs, Rosie, Patty, and Ginny. You all are so great here. :)

I never really thought of it in terms of grieving, but that's exactly what I started to do after reading that. Guess I've been stuck in the shocked stage and still holding out hope that as long as the doc calls it UCTD, maybe there's a chance it won't ever turn out to be lupus.

The good part is that hopefully the treatment will help, and I'll finally feel better and be able to do more.

Thanks again for listening to that long-winded message. I do have lots of questions but don't want to bombard the forum with them all at once, lol.
~ Bee

God is the strength of my heart! - Psalm 73:26

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 5/12/2008 5:25 PM (GMT -6)   
Bee, I'm sorry you have lupus but I know you are relieved to finally know what you are dealing with, that's the way I felt too. My first rheumy said I had UCTD too but at that time I had no health insurance but she did put me on Plaq, which helped a lot. After another year or so it had progressed and there was no of denying it. In my opinion, it really doesn't matter what the doctors "call" it...... what matters is that your symptoms are being treated!

I know how hard it is to talk to family about it, I think there is only one person in my family (besides hubby) I can talk too! It's hard for healthy people to understand sickness, especially chronic a illness such as lupus. Lupus is not something they can "see" and we look semi-healthy so it's even harder for people to grasp it.

As you can see this is a wonderful place, I don't know what I would have done without these ladies. Hang in there and remember we are here for you. You are in my thoughts and prayers.

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 14, 2018 11:44 PM (GMT -6)
There are a total of 2,992,780 posts in 327,988 threads.
View Active Threads

Who's Online
This forum has 161200 registered members. Please welcome our newest member, kum70885.
221 Guest(s), 5 Registered Member(s) are currently online.  Details
Pratoman, InTheShop, Steve Smith, Txladi29, BOB 46