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New labs + Ongoing symptoms + Plaquinel

Discussion in 'Not Diagnosed Yet?' started by Tired, Feb 23, 2016.

  1. Tired

    Tired Member

    I posted a while back with my symptoms and labs. At that point, the only significant lab I had was a positive ANA (1:640, speckled). Oh, and a strong family hx of SLE (mom and great grandmother both dx with it). Joint pain (multiple joints, usually all over but sometimes isolated to just fingers, wrists, elbows, feet and toes). Fatigue. Photo sensitivity and red rashes across my cheeks, nose, chest, and upper arms.

    Last year, I started experiencing scary heart and lung symptoms. Severe chest pain at rest, short of breath after walking to the other side of my house, pain when breathing in, constantly felt as if my heart was racing... Rheumy discovered that my BP was high (150/100) and so was my HR (120). She put me in Cardizem and Plaquinel. After Plaquinel kicked in, the chest pain (which was minimal at that point) basically disappeared. I also had 2 weeks where I felt like I was back to 100%. Unfortunately, it was quickly followed by another decline...I'm exhausted, it seems like I always have a headache and my chest/lung pain has returned. It's not as severe as it was before, but it is occurring daily. I still break out in the same rashes, and my feet and fingers have started to swell and turn red. Joint pain all over again.

    Oh, and my sed rate came back high for the first time ever. It was 41. CRP was normal. Vit D was normal for the first time.

    We've progressed from "fibromyalgia" to now "undifferentiated inflammatory arthritis". I also have Hashimoto's Thyroiditis. I still feel like it's SLE. Though I know there's specific criteria and that it often takes time to get a specific dx.

    More than anything, I just really want this chest/lung pain to go's annoying but it's also still scary.

    Anybody else been there with Plaquinel? I am on the starting dose so maybe it needs to be upped?

    Thanks for reading.
    Last edited: Feb 23, 2016
  2. x_claire_x

    x_claire_x Moderator you are only on 200mgs Plaquinel ? I am wondering why it hasn't been increased? Also have you had a lung/chest scan ?
  3. Tired

    Tired Member

    Yep, I'm in 200 mg. the last time I saw her, I was in the middle of that 2 weeks when everything was great. So she kind of left it at that, at the time.

    No lung/chest scan yet. I think she was waiting on me to get a GP and go about it that way, but to be honest I don't have the energy to look up a GP and wait to get in with one. Should I just ask her to do one, or refer me to a cardiologist or pulmonary doc?
  4. debatat

    debatat Moderator

    You could ask the rheumy to refer you for a heart and lung scan and see whether they are willing to do that or just refer you to a cardiologist.
  5. x_claire_x

    x_claire_x Moderator

    Hiya... I assume you are under the care of a Rheumatologist? It sounds strange to just 'leave it' when you have been experiencing chest/lung issues....I don't think that should be left. And I do not know why they can not refer you for these tests without going via a GP ? Sorry more questions !!:speechless:
  6. Tired

    Tired Member

    I'm okay with questions. :)

    Yes, she's a rheumatologist.

    Not sure, other than she just really wanted me to get a GP. I'm not sure how helpful the GP route is going be, but it seems like I don't have much of a choice really. She didn't mention any tests at the first appt, just started me in Plaquinel and Cardizem, asked me to get a GP and eye doctor. It's because this is continuing that I want to have it checked out. Hopefully I can find a good one who will listen to me and refer me for the tests.

    It's frustrating too because she treated my moms SLE and PSA for years...literally over a decade! And she always referred her for tests whenever stuff came up. I don't understand why I'm different. My mom (who comes with me to my appts) has noticed that she treats me differently, too. Sometimes I think she doesn't take it as seriously because of my age (I'm in my 20s but I've been symptomatic for 8 years since I was 16). I don't really want to get a different rheumy because she does treat my pain adequately. I just wish she could refer me instead of adding to how much I have to do in order to get these tests.
  7. x_claire_x

    x_claire_x Moderator tricky... the more I hear though, the more concerned I am.....if she didn't do any tests how has she done any diagnosing ? and to not order them herself is highly unusual.
    You should have had a baseline eye check prior to commencing Plaquinel and regular checks whilst on it. So yes you do need to get them looked at but I go to a regular eye/opticians who do very indepth checks these days...that may be a good way to move forward for now.

    I really think the Rheumy should be taking more responsibility for getting some answers with you and checking out the symptoms that you have been displaying particularly important when it has been related to your lungs and chest don't want disease unchecked to cause any damage in these areas..don't want to worry you at all...but it is very important to rule out any involvement with these wonder you are tired, sounds like an upward battle for you, and really it shouldn't be so hard.

    I leave a thought with say she treats your pain adequately, but if she was treating your disease better you wouldn't have so much pain and so much need to treat it :0(( so glad you have found us here...but if you are not getting the care you deserve you may need to start looking elsewhere and not stay there out of habit sadly.

    Wish I could help more..............Claire
    Last edited: Feb 24, 2016
  8. Tired

    Tired Member

    I agree that was a missed opportunity to not only figure out what's going on with my heart/lungs but also potentially diagnose me (or rule out) SLE. Here I am, 6 months after I first started having heart/lung issues, and they're still continuing...I feel like that could have been addressed from the start. It's frustrating.

    Yes, I have a little personal experience with SLE going unchecked in family members. My mom's SLE led her to having a blood clot in her lung, and my great-grandmother's SLE led to eventually needing a pacemaker put in. My rheumy is aware of this, too...

    I think I'm going to, for the mean time, get a good GP and ask them to order the tests. In the future, I'll be sure to ask her why she can't just order them herself, and explain that her not doing that adds to the list of things that I already have to take care of. Hopefully things will get better.

    Thank you for your advice and taking the time to respond. :) It's good to hear a perspective from someone who has been there.

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