First rheumatology appointment tomorrow morning

Welcome Greetings and Introductions
1

Hi everyone,

I just joined this community. For the past year or so I have joint pain and fatigue, and as of three weeks ago, I am covered in hives with severe joint pain headache and fatigue. I've been working with my primary care doc (who thankfully, I saw in college 15 years ago, when I struggled with asthma, pleurisy (twice!), endometriosis (4 surgeries) and IBS). She referred me to rheumatology as soon as I mentioned joint pain, and she ran the first round of bloodwork.

Tomorrow, I will report to rheumatology with these symptoms: Hives, rash, low grad fever, joint pain, redness, stiffness and swelling. Headache, mouth sores, nasal sores, rash worsening with sun or heat or contact with clothes, facial swelling, hand and feet swelling, eye lid swelling.

I have a couple of questions: Can this be anything BUT lupus?

What are the chances that I'll hear any news at my first appointment, or will she hold back and just do blood work?

I have pictures of the rash when it first developed. I also have pictures of my son (age 9) who has had health problems since birth, including presenting with a weird rash at about a week old. I saved the picture of that rash, because she never got an answer about it, and comparing it to neonatal lupus images, it definitely looks suspicious. My son also is on the autism spectrum, and had IUGR and placental insufficiency.Should I bring all the pictures?

Sorry for the wall of text and all the questions. I feel lucky to have been referred to a rheumatologist so quickly, and I am hoping I get some answers, even if I don't like what she tells me.

Thanks for any advice or help you can give me!

2

I was. Diagnosed with Lupus in 2010, but I think I had It since 1971. Yes I think you have Lupus by your info and I would be interested to find the results from the doctor .

3

Good luck at your appointment today. It’s difficult to say what the rheumatologist will do. Likely to do a physical examination and do more blood work. Lupus is so difficult to diagnose and often gets complicated by other autoimmune issues going on in the body. But a good doctor should be able to tell. Also, I would bring any information you have pertaining to your health. The more information the rheumatologist has, the better able he/she will be able to diagnose you properly. Please keep us posted.

4

Take all your pics , be honest about your symptoms any family history . Honestly the rheumy will do test first becuase what I have learned there has to be like a dna stran or something like that to be “LEGALLY” be diagnosed as lupus , even if you do have most of the common symptoms. Good luck

5

Have faith and be prepared for everything. Lupus is the great pretender so be surprised

6

I can't say how many folks were diagnosed on their first appointment, but I can say for certain that that number is far outweighed by the number of folks who have NOT been diagnosed on their first appointment. Partly this is because, as others have said, it mimics other diseases. A good doctor will want to make sure first that these other diseases (which are often easier to test for) are not the cause. So don't be surprised if you get several appointments of "let's check this now" sort of stuff.

I would say, though, that it would be fair to expect some sort of medication to be prescribed. It may not be much (I started out on a heavy dose of ibuprofen first), but it will be something to begin with. My doctor actually also used medications to help rule things in/out. My rehumy has told me that there are really only a handful of medications to handle these sorts of symptoms, so even if you aren't officially diagnosed, you are likely to begin the right kinds of medicines that will help.

I'm a little gorggy this morning, not feeling my best, so pardon if I rambled! Hang in there, and stick around! This community is the best. (And do give us updates!)

7

Good luck at your appointment and definitely take your pictures and all your health history with you. I started with Lupus like symptoms about 4 yrs ago and it took a second opinion with a new rheumy to finally get the right diagnosis. I pray that you get the right diagnosis as soon as possible, but don't be surprised it it takes a little while. Lupus is hard to diagnosis. Keep us posted.

Blessings!

8

Well, it was definitely an interesting appointment. She was interested in all of my history, as far out as my uncle who has psoriatic arthritis, my great-grandmother who had rheumatoid arthritis, and all of my strange medical history. She did an interesting test where she put saline lubricant on my fingernail bed, and turned off the lights and looked through the goo at where my fingernail meets my finger. She said she was looking for some capillary thing? I wonder if she was looking for vasculitis?

So, since I'm already on my second course of oral prednisone in 3 weeks, she gave me a shot of prednisone, which she hopes will help me get off the oral prednisone without the hives and crazy swelling all over my body coming back. I have been reading around on the site, and it sounds like getting off prednisone might be really hard?

I also went to the lab, where they drew 9 vials of blood, plus urine. And, she made an appointment for me with the allergist I've seen in the past. Next steps will be to see the allergist, then a followup with rheumatology and results of the blood.

Thank you all so much! What did people who were afraid of medical diagnosis do before the internet?!

9

OK, so I finally got my lab work back, but I don't see the doctor until August 1. All tests were negative, except vitamin D was undetectable. The rheumatologist said she thought this could be the cause of all of my issues.

So my question is this: would any of the tests be negative because of all the meds I am on? I've been doing prednisone, xyzal, benedryl, tagamet, elavil, mobic, and occasionally lorazepam. That's two antihistamines, a histamine blocker, a steroid, an NSAID, a and tricyclic antidepressant ... I don't want to get my hopes up that all that's going on is a vitamin D deficiency, only to find out in three months that it's not?

What have you all found your rheumatologist decided if blood was negative?