It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board

  • Are these early stages of Lupus?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 11-01-2013, 11:23 AM   #1
    Sw23
    Junior Member
    (female)
     
    Sw23's Avatar
     
    Join Date: Apr 2013
    Location: North Eastern Pennsylvania
    Posts: 10
    Sw23 HB User
    Lightbulb Are these early stages of Lupus?

    I just have a few questions. About two years about ago (when I was 25) I was really sick with a flu like cold for about 2-3 months. When I finally got better I headed back to the gym but I couldn't do all the things I could before. I was weaker and my flexibility was gone. I figured it was the time off but instead of getting better I got worse. I have been gaining weight constantly and the swelling is out of control. If I am doing something repetitively with the hands I over heat and my wrists and fingers will swell and I will sweat terribly. I went to the endo thinking it was my thyroid and he basically laughed me out of the office. He pointed me to the obgyn and my hormones are all out of whack and been recently diagnosed with PCOS. My estrogen is through the roof and my insulin is on the higher side. She then pushed me to see a rhuematologist who pointed out that I have a malar rash (which I thought I was just pink my entire life) and that my tapered fingers are both signs of Lupus. Also my allergy to sulfa based medication I was told was a sign. I am not sure if I have a reaction to the such. My skin does turn red from being in the sun but I didn't know if that was sun burn. I had a ton of blood work done and was told everything was normal and my ANA was neg. I have follow up blood work in a couple of weeks and the visit in December.

    I was always a very healthy, able to exercise and eat well. Could being really sick have brought this out? Does anyone have a similar experience?

     
    Sponsors Lightbulb
       
    Old 11-01-2013, 12:16 PM   #2
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,122
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: Are these early stages of Lupus?

    To answer some of your questions, a prolonged infection can be a trigger that activates lupus. Two of the most commonly associated viruses are Epstein-Barr virus and cytomegalovirus, both of which cause a mono type illness, that acts like a bad cold or flu that lasts 2-3 months, with severe fatigue. I do hope that someone has tested your thyroid in the meantime. I have never heard of tapered fingers being suggestive of lupus. It is true that many lupus patients are sensitive to Sulfa, but so are lots of other people, so I wouldn't give much weight to that. Early in lupus, the ANA and other markers in blood can be negative, so I think anyone with suspicion should have those tests run at least yearly, preferrably during a flare.

     
    Old 11-01-2013, 06:54 PM   #3
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Are these early stages of Lupus?

    Hi & welcome. Like Ladybug, I think it makes sense to have labs done again done the road. Also to deal with the PCOS as best you can. Also to revisit thyroid down the road. BTW, people who are headed to hypthyroidism can first have a period of hyperthyroidism.

    i think it's the sulfanomide class of antibiotics that can wreak havoc in susceptible people, with reactions a whole lot worse than skin eruptions. (I had a horrific reaction to some antibiotic as a child, not sure which one, fever of 108 and convulsions, and was wiped out for a year.)

    Right above the user threads are "sticky posts" containing basic info. You'll find the criteria used to diagnose and classify systemic lupus. Also, in the second half of the criteria post, you'll see "alternative criteria", a fascinating list of things seen earlier in life in people who later develop lupus. (Sulfanomides are on that list.)

    I've never heard anything about tapered fingers being a sign of lupus, either.

    I was told that even the best doctors can't reliably differentiate between a malar rash and rosacea---or diagnose any lupus rash visually, for that matter. The only sure way is skin biopsy with immunofluorescent stain tests. Biopsies scar (hurt, too!), so they're usually only done on people who haven't met a sufficient number of diagnostic criteria.

    You should starting getting copies of all your labs, at least until you figure out what's going on. And feel free to post any results you want to talk about. So keep us posted, OK? Sending best wishes, Vee

     
    Old 11-07-2013, 05:26 PM   #4
    Sw23
    Junior Member
    (female)
     
    Sw23's Avatar
     
    Join Date: Apr 2013
    Location: North Eastern Pennsylvania
    Posts: 10
    Sw23 HB User
    Re: Are these early stages of Lupus?

    Hi,
    Thank you both for your replies! I really appreciate any insight I can get. I feel like I put so much pressure on these half hour appointments and forget to ask half the things I wonder or to tell her about half of my symptoms.

    I have been looking as well about this whole tapered finger thing and I have found nothing on line about it. She kept calling it a "soft marker" ? and said that they are typical with flexibility? I wasn't completely understanding. I do really like her a lot and she spent a long time with me and really did listen. It was a lot more than other specialists have been doing.

    I started this whole process about two years ago without much luck and they have checked my thyroid about every 3 months and the TSH always bounces around but is within the limits.

    I have to get my blood work done in a couple of weeks. This is probably a dumb question but what is a flare? Currently I have been on and off sick since the 10/18/13. I first lost my voice then had only chest congestion. The NP from my Drs. office gave my a z pack and it worked by my chest congestion came back and my neck hurt really bad. My muscles are all tight and I am just exhausted sleeping about 10 hours a night. Am I just sick? or is this a flare?

    Thanks for reading! I really appreciate it!

     
    Old 11-08-2013, 05:53 AM   #5
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Are these early stages of Lupus?

    Good morning. Lupus tends to flare & recede. When symptoms are acting up, that's a flare.

    I don't think you can know for sure what's causing your 3-week malaise. I mean, people do get respiratory infections & flu, sometimes one after another, despite taking antibiotics. On the other hand, if this is lupus, people with lupus do get an abnormal number of infections, e.g., sinus, UTI's & the like. The immune system in lupus is over-vigilant yet aberrant; and depressed WBC's are common, which reduces ability to fight off infections.

    I suspect all you can do for now is continue your follow-ups, and keep reading. In your shoes, I'd definitly read as much as I could find on PCOS. I think it increases your odds of certain things that can wear you down, like
    (1) autoimmune thyroiditis (Hashimoto's).
    (2) depressed Vit D. If yours hasn't been checked, I'd ask for that.

    Also if you take any meds, you could double-check side effects, to see if muscle pain, fatigue, etc. are listed.

    Gotta say, I was very curious about that tapered-finger thing! Didn't find a blessed thing on it, but I did read that there's something called "lupus thumb", where base of thumb hugs the palm, but the nail part curves outward, like the hitchhiking gesture.

    You could borrow library books on lupus, to see what its most common symptoms are. People who demonstrate things that are ONLY seen in lupus will have an easier time getting answers. It feels to me that your rheum is noticing some things she considers "soft symptoms" (as she phrased it), but she'd need some very "hard findings" to diagnose lupus. Do hang in there, and let us know what's happening. All my best, Vee

     
    Old 11-08-2013, 07:34 AM   #6
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,122
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: Are these early stages of Lupus?

    Frequently an infection will put you into a flare with lupus, so the 2 go hand in hand. If you have not had anti-thyroid antibodies checked on blood, I would ask for that with next labs. You could have Hashimoto's as well, adding to the fatigue and causing the fluctuations in TSH. It also causes fatigue from cytokine release from the inflammation in the gland, even if your T3 and T4 are ok. The antibody test is completely different than the hormone test for thyroid and includes anti-TPO and anti-TG. Many people with lupus have Hashimoto's also. Since you forget to mention symptoms and ask some of your ???s, just jot them down on paper prior to app't. Glad you have a Dr you like that listens and cares. That is half of the battle won already!

     
    Closed Thread

    Tags
    lupus, malar rash, pcos, rhuematologist, swelling



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 11:19 AM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!