Should I be feeling better, not worse?...and what to do?

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New Member

Date Joined Jan 2011
Total Posts : 14
   Posted 8/8/2015 11:59 PM (GMT -6)   
Hello all,

I need some advice or some guidance.

To cut a very long story short, I have been diagnosed with lupus for almost two years, after four years of attempting to find a diagnosis for a multitude of symptoms...I'm sure many of you know that story. To complicate things, I also have pretty severe Celiac disease which has been under control by strict diet since age 15 (I am now 28).

I have been on CellCept for about a year and a half, and prednisone and plaquenil off and on for four years. Since my diagnosis, I have been on prednisone and plaquenil continuously. I am currently on 10 mgs of pred daily, though I could probably feel better if my dose was higher. However, the side effects... the bloating is the worst for me, but I also feel that it contributes to depressed mood.

I got a new rheumy six months ago, because my original rheumy had to take a long leave of absence. I originally liked the new rheumy, but now I have noticed that she seems somewhat removed and rushed during our appointments, responding like she hears what I am telling her but I can tell that it goes in one ear and out the other. That is one of my problems.

My other problem is that I seem to be getting worse. Rather than getting better as I think I should be after being on 2000 mgs a day of CellCept, as well as daily pred and plaque, I overall feel worse than I did six months ago and even a year ago. Some of my symptoms have gotten worse and I have developed some new ones. (To be fair, some symptoms are better too.) I have leg pain that I have had for several years but it has just gotten worse--it worsens with activity and hot baths and I worry about vascular issues because one of my original lupus tests showed I need to remain aware of potential vascular problems. The leg pain sometimes keeps me up at night.

I have achy limbs several days out of the weeks, and overall my energy is low. I have no energy except to got to my job and come home. And I have a symptom that I rarely had before: joint pain and swelling, particularly my wrists and shoulders and hips, especially on the right side, and occasionally my ankle. The swelling is minimally noticeable but the pain is often significant. My hip, especially bothers me tremendously and sometimes even hinders my activity, such as walking my dog.

I am frequently nauseous, frequently dizzy, and frequently weak.

Basically, I feel like I am in a mild flare 70% of the time. 20% of the time I feel kind of okay, and the other 10% I feel like I am in a severe flare.

My blood testing has been overall okay, except my complement factors have been low each time for my past four blood tests. Granted, who knows what they would be like if I was off the prednisone, which of course is the ultimate goal. Two blood tests ago I had protein in my urine, but that didn't happen again.

My questions are.... by this time, on all these meds, shouldn't I be feeling a little better, not worse?
Should I find a new rheumy, one who seems to truly listen and want to be proactive?
Should I think about trying a new medication, such as Humira?

Thank you in advance for your advice and listening "ears" :)

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 8/9/2015 7:46 AM (GMT -6)   
Humira is not regularly used for Lupus - as a matter of fact, one of the listed warnings/side effects for Humira is med-induced Lupus!!!! Stay away!

It does sound as thought Cellcept might not be the med for you. There are 3 meds, Imuran, Cellcept, and MTX, that are about the same level of treatment. It is not known why each of these either works or doesn't work for an individual patient - it's a matter of trial and error to see which gives you the best results.

For instance, Imuran did nothing for me but Cellcept made my Lupus quiet. (Rheumies don't say remission.) Others do really well on Imuran but Cellcept does nothing for them.

There are 2 newer treatments that are more aggressive than the Imuran/Cellcept/MTX options -- these are Benylsta and IvIG.

You may need to talk with your Dr about exploring these other options. It's best to write down, maybe in list form, symptoms from when you felt better to now. I mean, two lists with each symptom in each list, side by side. Like:
------------------------- Jan 2015 ------------------- Aug 2015
Joint pain in hands -- Twice a week, pain 5 --- Everyday, pain 7

Make 2 copies of these lists to take with you to the appointment. Then you have one to read from while the Dr follows along on her copy. Since you've only been with her 6 months, she may not be as aware of your disease progression as she could be. Then ask her if there is another approach that can help you feel better!

The "goal" as you put it, isn't to come off of Plaquenil (slows progression of the disease) or Plaquenil (reduces inflammation) -- often Lupus patients are on these for life.

The goal is to feel better so you can have a life!
Let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 8/9/2015 2:46:29 PM (GMT-6)

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