So very frustrated

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alli sunshine
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 7/16/2013 9:30 PM (GMT -6)   
I am 46 years old.Four years ago, I was having numerous health issues. I was extremely anemic, having a lot of joint pain and bone pain, fatigue, etc. During that time, my PCP ordered an ANA test due to my symptoms and the fact that I also have suffered from Raynaud's for some time. It came back positive at 1:640. PCP sent me to a rheumatologist. Turns out he was not very good (saw a friend of mine who has lupus and did not treat her properly). I was sick of seeing doctors at this point, so I gave up. Also, my vitamin D levels were only 7, which was causing a lot of bone pain. (Also want to add that my mom and an aunt have RA.)

Over the next 4 years I had a hysterectomy and iv treatment for anemia. Still, though, the joint pain and fatigue were there. I also had periods of where I just felt awful, achy and almost chills but no fever. I started taking 500 mg of naproxen 2 times a day to try to deal with the pain, but it just took the edge off. I ended up with LPR, a type of silent reflux. My PCP kept asking me if I would please try another rheumatologist, as she still thought I likely had lupus. This May, I could not take it anymore, and called my friend's new rheumy, whom she loves. I saw him in June. He said very little at the appointment, ordered a ton of blood work, and put me on Meloxicam (15mg). I got a call a couple of days later saying that my vitamin D was 23 and he wanted me to start vitamin D again. (I have tried over the past 4 years to get it higher, even on ultra high prescription doses. This is as high as it got.)
I had my follow-up today. The receptionist didn't check me in right, and I sat for 35 minutes in the waiting room. When I got back, it was obvious the doc had not looked at my chart. He asked how the Meloxicam was working, I told him it is better than naproxen, but I still have pain on most days, He checked my joints and then said, "let me see if you have had any labs since your last visit." Really? You mean the 7 vials of blood they drew?? He glanced at at them on the computer. I mentioned that he had had the nurse call and tell me to start vitamin D again and that he wanted to recheck it today. Oh, he said, let me have her get that order written up. He then left. The nurse came in with the order, and I asked for a copy of my lab results for my file. She got me a copy, told me to come back in 4 months, and that was the end of my appointment.
I got out to the car and saw that my ANA is still positive at 1:320. This wasn't mentioned at all. He did run antibody tests that were negative. I feel very defeated. Does this mean that my joint pain has nothing to do with my ANA tests? Some days I feel so bad, it is all I can do to get out of bed. However, I am not a complainer, so perhaps I didn't complain enough at the visit. Really, I could just cry, if I was a crier, because I am so frustrated. My PCP really wanted me to try plaquenil and is convinced there is an issue.
Does anyone here have any suggestions or advice? Do I just need to learn to live with the pain and fatigue? I have a long spinal fusion, so pain is not foreign to me, but I was hoping for some answers at least as to why. Thank you so much for reading this far, and thank you for any advice.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/16/2013 9:43 PM (GMT -6)   
It will not hurt you to try the plaquenil. it will take about 4 months for you to feel a difference, just in time to see him again. He probably wants to see if it will help you.
My rhumy started me out on meloxican and plaquenil. Some pain will always be there, but it should help you too.

Sorry you've had to get in the lupus hand basket.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/16/2013 9:48 PM (GMT -6)   
It doesn't sounds like your rheumy is particularly helpful. I might try to see another rheumy, but I'm sure that sounds particularly frustrating. Many of us have a long difficult time getting diagnosed.

A good way to find a rheumy experienced with Lupus is to check with www.lupus.org - find your local chapter, then contact them to see what local rheumies are on their board - these are the folks actually interested in helping Lupus patients. Your current Dr doesn't seem very helpful at all.

ps. Meloxicam is an anti-inflammatory (similar to Feldene or Proxicam).
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

alli sunshine
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 7/16/2013 9:52 PM (GMT -6)   
Thanks for your quick reply, tater. :). At this point, though, I am only on the Meloxicam. My PCP did not want to prescribe plaquenil herself and was hoping the rheumy would do it. So, I feel like I am still stuck without a lot of answers.
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