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Posted 9/9/2013 7:07 PM (GMT 0)
Hi: I have suffered with severe pain in multiple joints for years. I also will get an allergic rash reaction when out in the sun for longer than 10 minutes. I recently had blood work and had a Positive P-ANCA and a high Anthistone AB result. Also, my IGM was very low. I don't know what all this means. I have seen so many doctors in hope for some kind of diagnosis. My rheumy suspects either Lupus, Rheumatoid Arthritis or what she's called UCTD. She has put me on Tramadol and 20 mg of Prednisone. Will the Prednisone cure whatever is going on with me? I haven't felt normal for years.
Posted 9/9/2013 7:18 PM (GMT 0)
welcome to the club, unfortunately lupus is a disease with a different set of symptoms for all patients and it might be hard to get a diagnosis (it took me 6 years).

The prednisone will help diminish inflammation, but it is not a cure. There is no cure for lupus, but more treatments are becoming available (rituxan, belibumab) which are antibodies that bind specifically on your sick immune cells (which cause this inflammation) and then your body eliminates them so they cannot cause you harm. I have been treated with rituxan (kills B-lymphocytes, these B cells are the ones that were making anti-body against my own tissue), and this is the only thing that worked for my hemolytic anemia. Also, I have less fatigue and pain.

Be patient and follow your treatments, eat well and relax and rest as much as you can. Wear sunscreen and cover up. With Lupus you need 4 out of the 11 symptoms to be 'officially' a lupy. I know it sucks but stay strong and don't give up, once you get a diagnosis everything will fall into place. It is not fun to be in the dark and not know what is going on inside your body.


And if it is RA, there is a treatment called Enbrel (Etanercept) which inhibits the inflammation pathway of RA. But it is a treatment not a cure. There is a test specific to RA, you should ask your dr.

Have you tried plaquenil? it takes 1-2 months before it kicks in but it does a good job reducing pain (nerve, muscle and joint).
Posted 9/9/2013 7:43 PM (GMT 0)
Thank you. I've been told that plaquenil will be the next step. I hate taking drugs. My primary physician had prescribed me oxycotin, but I pulled myself off of it for fear of addiction. The tramadol helps, but I still feel pain, its just more tolerable. The fatigue is there 24/7. Hands and feet are always cold - it can be 90 degrees outside. I've had several bouts of vasculitis where I break out with purple color spots on my lower legs. It comes and goes. By the time I saw my rheumatologist for the first time - I was a basket case and cried the whole time in her office. I have what I consider a high threshold to pain - since I've had pain for 20 years and every doctor before would just say it was due to old age, which I was only 40 at the time. Without a doubt, by the time I saw her I was very depressed. My rheumy ran a whole slue of test and the one that concerns me the most is why would my IGM be so low. That has to do with the immune system and I feel if it gets higher than everything with be back to normal.
Posted 9/9/2013 7:44 PM (GMT 0)
Welcome, dtor.

I have sun sensitivity and I avoid everything that emmits UV rays (fluorescent, CF bulbs, halogen, Tanning beds and of course sun light)

You can get UV protective clothing at coolibar.com.
Posted 9/9/2013 8:25 PM (GMT 0)
Thank you Joy for the information.
Posted 9/10/2013 3:12 AM (GMT 0)
Hi dtor,

Welcome to the lupus group, sorry that you're having such a hard time. Pain really is the pits I know I suffer with the stuff 24/7 as well as fatigue.

You've been given a lot of good information and I really don't have a lot add, except, that maybe you should ask your Doctor to send you to see an immunologist. I say this as I've had lupus for 26 years now, took my Doc's 13 years before the said yes and started treatment on me.

I am currently in a research study at The National Institute of Health. I have a lot issues, but my immune system isn't working properly. Of course, I've been on every single drug to treat RA/Lupus and they have suppressed my immune system big time. However, I have no B cells at all and only have 5 T cells. That's lower than your average AIDS patient with a low T cell count.

According to the Doctor at NIH, she feels that I have an Immune Deficiency Disorder in addition to my RA/Lupus and now Leukemia. I'm also possibly facing a serious issue with my lungs, which, I've already have issues with my lungs and am on oxygen 24/7. I know you are worried about your IGM and I really think it would help beneficial to see the immunologist.

Good luck with your quest to figure out what's going on. Please, feel free to ask any questions and let us know what the Doctor's decide for you.

Hugs,
Barbara
Posted 9/10/2013 10:38 AM (GMT 0)
Hi Barbara: I'm so sorry to hear about your pain and suffering and want to thank you for your information. I see my doctor, not until October 19 at which time I will ask her about the low IGM. When I mentioned my concern to her the first time, she appeared to dismiss it, as she wants to focus on the RA/Lupus. My gut tells me not to. I was diagnosed approximately 5 years ago with Peripheral Neuropathy, and now all of this. She said I definitely have Fibromylagia, either RA or Lupus, or both - as some of the markers were there, but not all. She called it Undifferential Connective Tissue Disease. I'm too young to be falling apart so early, if you know what I mean.
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