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First Appointment Thursday!

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Posted 9/22/2015 12:11 AM (GMT 0)
Finally! I've been waiting since July. I know many have to wait longer, so I am grateful. I know that there is something in the resource center but I cannot find it. I am looking for what to expect, what to bring, what to ask for my first visit.

Can anybody help?

Thanks!
Posted 9/22/2015 12:44 AM (GMT 0)
Check this thread - Lupus 101 - www.healingwell.com/community/default.aspx?f=29&m=184347
Posted 9/22/2015 1:07 AM (GMT 0)
Thank you so much Lynnwood! :)
Posted 9/22/2015 1:46 AM (GMT 0)
Sorry I'm short on personal responses today - trying to pack for a short trip / long weekend. If you have anything specific you want more info on just mention it and I'll try to help.
Posted 9/22/2015 1:58 AM (GMT 0)
Not a problem. I found just what I was looking for from the link you provided. You enjoy your long weekend, hope it's something fun!!! I will post after my appointment again with updates. I wonder how long my initial appointment will take. I'm sure I expect the Dr to order more blood tests. I wonder if I will have to go out to a lab or if it can be done at my appointment.

I know you will be away and you'll catch up next week sometime after you get back!
Posted 9/23/2015 1:18 AM (GMT 0)
I bet they will probably draw your blood there during your visit. The 2 different rheumatologists I saw had a mini lab in their office, they drew the blood in office and it seemed like they processed it there also. The rheumatologist I fell in-patient with took a urine sample, an xray, and the first visit took over an hour. Unlike my first rheumy.

The long wait for answers is excruciating, especially as it gets closer. It's like waiting for Christmas but without all the good stuff. I had to wait a month for the followup visit after the initial visit to get some definitive answers but it was worth the wait. Good luck on Thursday!
Posted 9/24/2015 10:04 PM (GMT 0)
Had my visit and it went well. I really like the doctor. He did a thorough examination. I will go back in 4 weeks. In the meantime I was sent for more bloodwork:

SSA SSB Ab
ENA Sm RNP Ab (Smith RNP antibody)
HLA B27

Of course I will be looking at my results as they come through, as they are available to me online as they are recorded.

My original bloodwork pretty much ruled out the RA that my GP originally suspected, so I guess that is why we need to look further.

I woke this morning to my left hip hurting like crazy and I had to start my day with aleve. It took forever for it to start working. I have also been dealing with severe pain in my toe joint (I have bad bunions). It is not constant....pretty much if I get on my tiptoes or wear certain shoes I get sudden excruciating pain.

So for now, we have another waiting game but that is ok with me! It won't be as long :)
Posted 9/25/2015 2:50 AM (GMT 0)
Great that you like the Dr, that is always a step in the right direction.
Posted 10/2/2015 12:07 AM (GMT 0)
Oh boy, I woke this morning to my knee hurting!! I didn't do anything to injure or jar it at all, this came up suddenly. So I started my day with 2 Aleve and went to work. My morning went downhill from there. I almost left work and if I didn't have so much to accomplish I would have. I finally started feeling better right before lunch, except for my knee still hurting. I just felt overall sick, nothing specific....maybe a little nausea and disoriented. I wasn't sure if I should call my PCP or the Rheumy or not at all and wait to see if I feel better tomorrow. I did end up calling the Rheumatologist office (had to leave a voicemail) around 3 and didn't hear back. I know they were open until 5 today. Oh well, maybe they will call me tomorrow. I don't see my bloodwork results posted yet....not sure if the Dr's office sometimes blocks results from being posted....? It was a week ago today that I had my blood drawn.

Will try to update tomorrow on whether the rheumy calls and how my knee is. My husband and I and son are going to a baseball game tomorrow....hope my knee can take it!
Posted 10/3/2015 3:03 AM (GMT 0)
Well, I got to talk to someone at the dr's office today and I had a prescription called in. The lab results aren't in yet. The Dr prescribed Meloxicam. I can't begin it until tomorrow because I have to have the ibuprofen out of my system first. So tomorrow I will start it. I made it thru the game tonight, was a slow walker though. Our team lost :( The final game of the season is Sunday.

I wonder how long it takes for these labs to come in. It was a week yesterday.
Posted 10/4/2015 6:16 PM (GMT 0)
My knee is still inflamed. I wasn't able to take the first Meloxicam until yesterday because my Dr didn't want me to take it Friday as I had already taken ibuprofen. It did help me. The nurse at the office was trying to tell me something that the Dr said.....something like "treating the disease". I think the point she was trying to get to me is that I haven't been diagnosed with anything yet so he is only willing to treat my symptoms, as in the anti-inflammatory meds that he prescribed. I've had some heaviness feelings in my hips over the past couple of days now plus some strange throbbing without pain, like a twitch in my shoulders and in other joints, so strange!
Posted 10/13/2015 9:58 PM (GMT 0)
Good news! All 3 of the most recent labs are negative. SSA SSB, ENA Sm RNP and HLA B27. I'm very relieved because I think it means I don't have lupus, or at least I hope so! I am not sure because of the fact that I have positive ANA 1:640 speckled means anything. I mean will I still have to do further auto-immune testing to find the form that is affecting me, or can I rule out auto immune problems, or what. It is confusing because I still have these joint issues and it is obviously something. I have follow-up with the rheumy in early November so I am sure I will have these questions answered to some degree.
Posted 10/14/2015 12:58 AM (GMT 0)
Hi,
I am a lurker but i have been flaring up on and off for the last 3 years- mainly in the fall/winter time when it gets cold. I have had all the tests you have done negative as well but i have a positive ana homegeneous 1:160. I was told not to worry but with a positive ana it freaks me out. Have they told you where to go from here?
Posted 10/14/2015 1:55 AM (GMT 0)
Hi newgirl. Wow, flaring for 3 years! Do you have any permanent damage? My finger joint has a hard, bony mass on it. It's been almost 2 weeks with my knee and it's not better yet. I haven't had a follow-up with the Rheumatologist yet, so I'm not sure what he will say to do from here. I do worry that because I've had several joint flares, what's next, and since I don't know why, how will I get treatment. This is a strange situation to be in, and I can't imagine how difficult it must be for you 3 years in!
Posted 10/14/2015 3:00 AM (GMT 0)
Very often treatment comes before diagnosis with auto-immune diseases. Part of the diagnostic process is sometimes trial-and-error with different medications to see how we react.

Early trial treatments most often include plaquenil and prednisone.

Keep us posted!
Posted 10/14/2015 10:46 AM (GMT 0)
Thank you Lynnwood! The information you provide is always very helpful to me!
Posted 11/5/2015 11:16 PM (GMT 0)
2nd appointment today. Although my bloodwork for the above mentioned are negative I could still have Lupus but for now he is calling it "inflammatory arthritis". He prescribed Plaquenil and ibuprofen 600mg. I have to have a thorough eye exam before I begin the Plaquenil, which I am going to do Saturday. I'd love to know other's experience with Plaquenil. What should I expect when starting it and your experience with side effects?

Thanks all for reading! :)
Posted 11/6/2015 12:04 AM (GMT 0)
I've been on plaquinel for four years and have had no trouble with it. Some people have claimed some stomach issues while adjusting to it.

Just remember to get regular eye exams.
Posted 11/6/2015 2:52 AM (GMT 0)
Yes, Joy is right.

Some people have a upset stomach for 1-2 weeks when starting Plaquenil, and you need to have a visual field eye exam by a ophthalmologist every year. (Just tell the eye dr you take Plaquenil, they know which test you need.)

If you have other side effects, and we have had some people who HAVE had nasty reactions, stop immediately and let your Dr know about it.
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