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Thread: Some symptoms are coming back..... :/

  1. #1
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    Default Some symptoms are coming back..... :/

    So over the last week or so I have started to get some symptoms back of my "lupus." I quote it as so only because I saw my rheumy last week and she says she is calling me "UCTD w/features of SLE" because I dont quite fit the criteria of it even though the criteria is not the best to go by alone. She said basically I couldn't be put into a clinical trial because I do not have all the required symptoms. I swear I wanna hurt someone lol Im so tired of the back n forth crap. So should I consider that I have lupus or not? Should I consider having MCTD?

    She also said that its strange my "lupus" seemed to go away with the pregnancy because usually lupies remain the same symptoms wise and rheumatoid arthritis patients are the ones who "feel like new." I cant stand these autoimmune diseases!


    She also said she thinks my disease will stay pretty quiet during the pregnancy, but because after having my son is when all this really started then she wont be surprised if i have a bad flare after and need to be put on prednisone. She fought me about prednisone before when I didn't feel well on the plaquenil still and now she's just like well you will probably need it so ok. These drs throw me for a loop sometimes! lol


    With that said, my symptoms are not totally gone anymore. I have been having very very light rashes reacting to the sun/lights, burning pain in my legs again along with aching & some joint pain/puffiness in the mornings. Headaches which I cant tell are tension headaches from pregnancy or not. Ulcers have come back some which were completely gone for weeks! I am waiting on blood & urine to come back that I got done in the midst of these symptoms. Any thoughts/opinions?


    In speaking of the burning pain leg symptom, I want to post another discussion specifically about that. Since I have been having the symptoms lately and am not on meds for it anymore due to the pregnancy, I have some questions for people who have had experiences because they never figured out what exactly it was. More on that in the other post! Thanks and hope you feel ok. -Britt


    *11 weeks 1 day today-March 7th 2010*
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  2. #2
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    MCTD is a good possibility. That's my dx. I tested mildly positive to Lupus, RA, Sjogren's and psoriasis, so I have a few symptoms of each. It doesn't seem to matter w whole lot, since they all seem to be treated with the same meds anyway. Since you're pregnant, Plaquenil is the safest one for you to take for any AI issue.
    I answered you on your other pst, too.
    Take care,
    Hugs,
    Marla

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    When you say you tested "mildly to lupus" what exactly do you mean? What tests came out positive for you?
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

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    I don't know what her criteria were, but I'm assuming that the numbers on my blood tests were "low positive". I know that since then, I saw one result that said that the SSA (for Sjogren's) was 159, where 41 is positive, so I wouldn't call that one "mildly positive"!
    That's the best I can give you - sorry.
    Marla

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    No that makes sense thank you. I always had a positive ANA at 1/160 & 1/240 something speckled. Other than that I had CPK levels mildly elevated in the 2-300s and that was about it except ive had 2-3 UTI's which I know had to be kidneys because I didn't have the burning with urination like with bladder infections and I had only lower back pain that radiated up into my kidneys with sharp pains on either side at times and blood in my urine which I would start spotting so I knew what it was. Im not recalling anything else at the moment.
    Britt
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  6. #6
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    Hey Britt -
    Just wanted to say I understand your frustration with the going back and forth with Dx. Marla is right though that essentially they are treated the same - plaquenil, prednisone and immunosuppressants if symptoms get really bad. I was once officially Dxd then UN-Dxd by the same freakin doctor!! HAHAHA - As frustrating as it is, it is good that at least you are being treated....many docs say MCTD or UCTD (undifferentiated connective tissue disease) and give NO TREATMENT. The plaquenil has been proven to reduce flares, reduce intensity of flares(Particularly with rashes, joint pain and hair loss) and also has been proven to keep the lupus from affecting the organs. (Sadly, I was put on it too late - AFTER it attacked kidneys, lungs and now CNS).
    Also, (Im no doc) saying that lupus usually stays the same during pregnancy is inaccurate. I have read of MANY stories where women feel GREAT during their pregnancy...ugh...another uniformed doc....as a matter of fact - let me look at my Lupus Handbook by Daniel Wallace...it talks of pregnancy. Ill get back to you, but in the meantime...try to stay stress free as possible...you dont want to triggert a bad flare, especially while you have that little boy along for the ride!! Dont let the doc get you down....by your next appt she may change her mind again!!
    Hang in there
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    OK, Britt - This is what Daniel Wallace has to say in his book The Lupus Book: (though I have found SOME info in this book a little outdated - opinions on this disease changes like the weather as we know) but here goes:
    Low-Risk Mothers (which you would fall into as you have no uncontrollable HBP due to prednisone use, no myocarditis, active lupus nephritis, and are not receiving chemo) - Those who fall into this category have nothing to worry about (with regards to carrying child) and have the same risks as the general population.
    [COLOR="black"]What Will Hppen To The Lupus?
    Patients whose lupups is mild or moderately active at the time of conception have a 40% chance of having no change in their disease, a 40% chance of flaring, and a 20% chance of improving. The fetus makes cortisone, and by the 2nd trimester, mild disease may improve as the mother receives theis extra dose of steroids. However, various chemicals released in pregnancy can also promote inflammation. Most flares are mild and easy to manage. Serious flares rarely occur in this group, but mild cutaneous or musculoskeletal post-partum flares are common, esp between the 2nd and 8th weeks after delivery. The withdrawal of fetal steroids from the body may have something to do with this.

    Hope this helps...hang in there

    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

  8. #8
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    hi britt,

    congrats on your pregnancy progress....you have been here before, and you know what you are doing....a great job.

    sorry for the frustrations with the drs. You know, they say that lupus is intermittent, and very individualized....sometimes, i think the drs. are just as perpelxed by the variations as we are. There are many things that are similar, but each of us has our own individual ways that lupus affects us.

    hang in there, and keep doing what you know is right for you and your little one.
    Phyllis

    share a smile today

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