Just back from the doctor

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 4/29/2009 3:53 PM (GMT -7)   
Hi all, just got back from the dr.  He ran all my bloodwork again and here's the results.  ANA- positive, speckled pattern. RF- Positive, Epstein-Barr- Positive, Anti-Dsdna- negative.  Everthing else looks great.  My kidneys and liver are functioning perfectly so that is a huge load off my mind, since I've been taking medciation with tylenol in it for almost two years.  He's holding back a lupus diagnosis because the bloodwork isn't definitive, even though I now have 6 of 11 criteria.  I'm not real hung up on getting a dx, I already tell people that I have Lupus and leave it at that unless they ask.  He did say that I have definite AI issues, it will be with me for the rest of my life, I will have good days and bad days and that's just the way it's going to be.  I'm doing much better since starting a daily dose of pred, but really worried about gaining weight, my joints have enough to deal with.  He asked me if I wanted to see another Rheumy, just in case at some point we wanted to go to IV meds like methotrexate or something else, but we are so limited in our choice of doctors up here in the mountains.  It's a two hour drive to ATL,  I re3ally couldn't stand the last Rheumy I had and have yet to find a single person locally who even like their Rheumy.  So for now, anyhow, I think I'll pass.  PCP seemed okay with that, but I think he's going to start looking anyway, just in case.  So, that's the run down, I hope everyone is well.  God Bless.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Prednisone 15mg daily added 03/09.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/29/2009 3:59 PM (GMT -7)   
Hi Jennifer,

Glad to hear that the pred is helping. Its great that your PCP is able to help. It really would be great if you could get established with a rheumy, even if he's 2 hours away. He/she may be willing to communicate with the primary care doc.

I feel like you about the dx issue. As long as I'm being treated for my symptoms I'm happy to keep the bad words out of my medical file.

Take care.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 4/30/2009 1:01 PM (GMT -7)   
Hi Jennifer, Good news is nice to hear. Now the Rhuemy...gosh my first one really helped me and then after awhile I think I frustrated her with reoccuring flair. LOL You know, "I gave you this, this and this so you should be good to go." Unfortunately extreme stress happened and I broke through all the meds, including prednisone. I now have a doc who calls me back in a reasonable amount of time and keeps trying to deal with the symptoms. I hope and pray you find a good Rhuemy! It bugs too when SLE is not in any of the documents, but I am learning to accept that and just receiveve the treatment for the symptoms to have quality of lif. Today is the first day I am experiencing less pain with the lyrica. AMEN and AMEN!!! God bless Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 4/30/2009 1:52 PM (GMT -7)   
Thanks Rosie and Tammy. I'm finally starting feel a bit better after starting daily prednisone. I had tried neurontin and Cymbalta with no results, so my PCP doesn't think lyrica would be much help, but I'm so happy that it's working so well for you. My PCP is great, he actually seems to care about how I'm doing as whole and how I'm manging with the kids. The Rheumy I saw seemed only concerned with DX and labs and textbook guidelines, it drove me crazy when I was sitting in his office with my hands swollen, red and burning hot to the touch, with all my other symptoms, he says, "I'm not convinced you have an inflammatory disease". My husband said he's not convinced that guy had a medcial degree. He yanked me off all my meds and when I went into huge flare, he refused to put me back on plaquenil or give me any pred. That's when I found my PCP who immediately put me back on the plaquenil and gave me a pred pack which helped to quite things down a bit. I'm kinda scared of Rheumy's right now. Thanks for all the support, and God Bless.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Prednisone 15mg daily added 03/09.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/30/2009 2:19 PM (GMT -7)   
a good rheumy is a godsend a bad one can make life h#ll on earth. you may have to have a rheumy eventually and for that you may want to consider driving a considerable distance. I used to drive 300 miles one way for a decent rheumy now I drive an hour one way for mine and won't change even if we move far away. I would fly from florida to Michigan if I had to to keep my rheumy.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar

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