help needed in my lupus diagnosis
I am male at the age of 32. I started to have migratory joint pain with redness and hotness in my fingers, wrists, and knees as early as when I was 25 (7 years ago). The pain came every 2-3 of months. I did not pay attention to it since the pain was only 4-5 times every year. However, during the year 2007-2009, the flares-up became more frequent and it came every couple of weeks. It was obviously migratory around my knees, wrists, and fingers. Sometimes I got stiff and painful muscle in the bottom of my toes. However, between flares-up, I was completely healthy. I played tennis and had other exercises regularly. I started to see a doctor in 2009. Blood tests result showed positive ANA and equivocal ds-DNA AB (the value is 9 where <9 is normal). The doctor only prescribed Celebrex for me and kept me on observation. I took Celebrex on demand (only when flare-up occurs) and the pill is magic for me. One pill can kill the pain within 2-3 hours.
I stopped blood tests and seeing doctors for the whole year of 2010 due to some reasons. The frequency of the joint pain became once a week and I took Celebrex weekly to kill the pain. Early in 2011, I started to visit a new doctor and do blood tests every 1-2 months. ds-DNA AB oscillated around the value of 9 (<9 is normal). The doctor put me on Plaquenil from March, 2011. My pain became less frequent at the very beginning (after 3 weeks). However, it became the same as before but no worse. Then the doctor added Methotrexate in July, 2011. My pain became a little better at the beginning again, but it went back after 2 months. In Jan, 2012, the doctor replaced Methotrexate with CellCept. CellCept worked very well at the beginning and my ds-DNA AB even became normal (<9) from Jan to April. However, my pain was still there but obviously less frequent. However, everything became the same after April. The flares-up become 1-2 time every week and ds-DNA AB became 20-25.
During the past one and half year, at most of the time ds-DNA AB oscillates between 9 and 25 (<9 is normal) except the time between Jan and April 2012. During flares-up, I can feel low-level feverish (but actually no fever). All other blood tests are normal for me and I am completely healthy when I have no flares-up. I have some pimple-like rashes on my face. The dermatologist told me it was possibly malar rash and rosacea combined.
Now the doctor is going to put me on Benlysta, which is a pretty strong drug for Lupus. However, I have very big concerns. Firstly, I am still young and just started my career. I do not want to be put on such a strong and expensive drug so early in my life. Secondly, I am completely well except 1-2 joint pains every week. The existing Celebrex controls my pain very well and I take 1-2 pills every week. I even doubt if I really have Lupus or my symptom is caused by something else. Do I need to change a new doctor to see what other doctors say about my symptoms? I know there are many friends who are experiences in tackling Lupus. Therefore, I came here to solicit some helpful suggestions. Any suggestions are well welcomed. Thank you so much.
Last edited by wannago; 09-09-2012 at 12:58 AM.
hi and welcome,
there are quite a few of us males, who frequent here often.
whilst none of us are doctors.....
we can speak about our own experiences.
i have found that i have both lupus and fibromyalgia.
i believe that fibro has the ability to adjust to medications.
i am not saying this is what you have......
i am saying have a doctor test you for it.
also there is nothing wrong with getting a second opinion.
if celebrex is controlling your pain...... good.
but if your ds ana is still climbing....... it indicates that something underlying is still wrong.
your doctor would not be doing the right thing if he did not look at options for you.
but you have the final say.........
i agree benlysta does sound agressive.....but that may be what the doctor is trying to do.. be agressive to lower your ds ana.
Hey, Wannago, welcome to WHL!
I think you are right to question use of Benlysta. Not because it's necessarily wrong for you, but because it is an aggressive and expensive treatment. Is your doctor your refer to a rheumatologist? If not, you should probably consult with a rheumatologist before trying Benlysta.
And if the doctor prescribing Benlysta is a rheumatologist, I still think you should get a second opinion from another rheumatologist. Just be honest with them both, and tell them what you told us: say that you're young and feel like you have a relatively mild disease course, so you're wondering why it would be good for you to use Benlysta. Any doctor worth his salt will be able to explain his reasoning for the aggressive treatment. The explanation should be more than "other drugs haven't worked"; the doctor should be able to explain why the nature of your disease necessitates Benlysta. I think a second opinion and a detailed explanation from your current doctor is totally reasonable here.
Also, out of curiosity, has your doctor ever given you Prednisone?
Thanks for your opinions, Steve and Derrie. My doctor is a rheumatologist. I have never been on Prednisone. All my symptoms I have now is 1-2 joint pains every week(each time only one joint). My doctor seems to like Benlysta very much. She have repeatedly mentioned it since a long time ago, which gives me more concerns. I am planning to visit another rheumatologist recently.