Skip to content

    Announcements

    Attention All WebMD Community Members:

    These message boards are closed to posting. Please head on over to our new WebMD Message Boards to check out and participate in the great conversations taking place: https://messageboards.webmd.com/

    Your new WebMD Message Boards are now open!

    Making the move is as easy as 1-2-3.

    1. Head over to this page: https://messageboards.webmd.com/health-conditions/f/lupus/

    2. Choose the tag from the drop-down menu that clicks most with you (and add it to any posts you create so others can easily find and sort through posts)

    3. Start posting

    Have questions? Email us anytime at [email protected]

    Pittsburgh or Bust!!!
    avatar
    sleteacher1 posted:
    Hi everyone. I hope everyone is having a pain free day. I know I am much better today after getting my solu-medrol infusion yesterday.

    I finally told my Rheumy about the looming June 1st deadline the school has given me to get a letter from him stating I could return in the fall or not. I actually didn't tell him I gave him the letter from the school and said, "If I try and tell you this I will cry so I will just let you read it."

    He took the letter with him to read while I was changing into my lovely gown. When he came back in his first words were, "The way I am going to handle this letter is to send you to Pittsburgh. I am going to make a phone call to a guy I know there tomorrow morning and hopefully we can get you in by the end of this month or the beginning of April." He went on to say that there were still many things he could try but that I've lived in this "nightmare" to long and it was time for a fresh pair of eyes and the best eyes were at the Lupus Center of Excellence.

    They had actually sent my files with a cover letter from him in early Feb. asking for a second opinion but had still not heard back. He said by sending me they would start from the bottom to see if he has missed something. I really love my Rheumy!!

    I called my insurance company and they will pay for the actual consult with the new doc but if they did any lab work etc there would be a deductible and then they would pay a % and we would have to cover the rest. I'm going to see if they can do anything needed here before I leave and either take it with me or have them send it. If they want everything done in Pittsburgh then that's the way it will be done.

    I'm still not getting my hopes up about returning to work. Even if they do start me on a different med, we all know it takes most of our meds at least three months to notice anything and longer to really take effect. At least now I have a little hope back as before I had none.

    Thanks for all the support you have all given me. I love you all!!

    Teach

    PS: Unfortunately my Rheumy is gone to a conference until next week and was unable to get a return phone call before he left yesterday. He assured me that he was going to take his laptop and continue to be in touch with the doc in Pittsburgh and call me next week. Keep your fingers crossed.
     
    avatar
    DarkRose321 responded:
    Wow, I'm glad to hear it sounds like you are going to be getting really good care. I wish you all of the best You deserve it!

    Hugs, Alicia
     
    avatar
    renalupie1 responded:
    well well. that should be putting a smile on your face. If you decide to drive it, and go near me, let me know, and I can arrange to be off to meet you for a pit stop at a restaurant. I will treat!!

    Rena
     
    avatar
    LilPrego216 responded:
    As you know, you're in my thoughts and prayers! I'm keeping my fingers crossed that they can get to the bottom of this and get you back to feeling better! Continue to keep us updated! And I'm glad your infusion helped!

    Spaghetti
     
    avatar
    shellelaura responded:
    Where are you coming from? Your post gave me hope...I have been bouncing from one doctor to another for 3 years and then ran into an old friend who has SLE who gave me info on this practice and I have an appt there on the 24th...I really don't know what the heck I have, but I do feel like if they say I don't have SLE I can close that door....

    My last reumy - Oh dear where to start...First of all, my appt was 9:30 in the AM and I didn't leave the office until 3:00pm - I spent about 10 min of that whole time with him. Second, before he even did any tests or anything he patted my hand and asked me what I thought I had...I told him SLE. He smirked and said, "No, you have Fibromyalgia and your pain is real...don't let anyone tell you your pain is not real..." as if I needed someone to tell me my pain isn't real...He did bloodwork and xrays. The bloodwork is not elevated, and the xrays don't show any arthritis. I know from my research the bloodwork isn't 100%, especially when symptoms first appear.

    I'm sorry - babbling, but I need to get this out...I have 5 kids, never took even a tylenol for birth. I broke my arm and waited 2 weeks to go to the Dr...I have a very high pain threshhold is what I am trying to say. Last Sept I woke up with achy feet - never had that before. Within a week it crept into my knees (not the joints but the muscles around them) and my hips and lower back. I now have muscle spasms in my arms and legs, horribly painful feet and ankles - some days I feel like I am hobbling on broken bones. I have extreme fatigue - last night I fell asleep sitting up at 9pm and woke up at 8am this morning and could go right back to sleep. I am extreme sun sensitive - have been for 25 years...getting a rash that starts on elbows and knees and speads all over my body. My hair is falling out. I have patiki pin-point dots on my lower legs and lower arms. swollen sausage fingers and toes, blood clots (PE and brain clot in 2006) and lately, depression.

    Thank you for reading...I have kept it all in because my Mom & family and friends think I exaggerate or I am just stressed...I don't really have anyone to talk to. I am just disheartened and tired and I need answers...
     
    avatar
    HG1948 responded:
    Shellelaura,

    I know you were responding to SLETEACHERS post, however, you will increase the responses you receive if you repost your message after clicking on the "Start New Message" button at the beginning of the webmd "Lupus Board".

    Feel free to ask any questions that you have, or talk about anything that is bothering you. The people who post here have all either been seeking a diagnosis or have been diagnosed with lupus. What I am trying to say, is that you won't feel like a stranger here for certain.

    I am sorry you feel so badly right now. I also remember what it was like when my husband, my daughter and my primary care physician questionsed if I was a hypochondriac (sp) or really sick. There were times I was stayed so angry I could have "spit nails". My pain, which remained untreated was mind numbing.

    Sorry you are sick, but glad that you found this message board.

    HG
     
    avatar
    sleteacher1 responded:
    I'm from Wisconsin and have been battling a flare to one degree or another since July of 2007. The only thing that seems to work right now is monthly solu-medrol infusions but these steriods are harmful to us down the road so my Rheumy has been trying different drugs to get me into remission so I can stop the steriods. So far nothing seems to work.

    I've had SLE since March 1987 when I was dx with Lupus Nephritis. I had a flare in 1988 and again in 2001. I was pregnant both times and because my kidneys started to fail they took my girls c-section both times. One was born at 32 weeks and the other at 33 weeks. They are now 20 and 17 years old with no major health problems. After they were taken my kidneys went back to functioning semi-normally. It wasn't until 2007 when I started experiencing other symptoms such as muscle/joint pain and weakness, headaches, brain fog, lack of concentration, and memory loss. I have been in a constant flare to some degree or another for the past 18 months and my Rheumy as well as me decided it was time for a second opinion.

    I got a call from the Lupus Center on Friday but unfortunately I wasn't home to get the call. There was a message saying that my records had been reviewed and if I would like an apt they would accommodate me as soon as possible. I have to give them a call back on Monday to make the arrangements.

    As HG stated, if you ever have any questions you would like answered or even just to vent, feel free to start a new discussion and you are more likely to get your questions answered by someone on this group. Between us all there's not much one of us hasn't experienced and can point you in the right direction.

    Good Luck with your apt. on the 24th and let us know what you find out. Take care.

    Teach
     
    avatar
    DowCorning replied to shellelaura's response:
    Do you live in the Pittsburgh area? ... and did you ever have breast implants ....as they are known to cause Lupas, etc.?


    Coping
    With Lupus

    WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
    at work, or with family
    and friends.
    Visit Lupus Day2Night

    Helpful Tips

    StressExpert
    There is a big connection between stress and lupus. Although it doesn't actually cause lupus, it certainly exacerbates it. An article from ... More
    Was this Helpful?
    19 of 19 found this helpful

    Related Drug Reviews

    • Drug Name User Reviews

    Report Problems With Your Medications to the FDA

    FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.