View Full Version : Hello Everyone

11-19-2008, 12:31 PM
Hi. I wanted to introduce myself. I believe that I may have lupus. I have had many problems for many years. The Drs always blamed it on stress or just aging. While I believe the problems started as early as my teens...I was never diagnosed. I had Hepatitis B at about age 10. They believed that I caught it in the hospital. In high school, I had mono (who didn't). I was always abnormally tired. In my early 20's, I was diagnosed with Epstein Barr. I have always attributed my fatique to Epstein Barr. I started having some serious abdominal pain in my mid-30's. This went on for about 4 years with no diagnosis (lots of horrible tests). Finally, the pain didn't go away so they performed emergency surgery. My large intestine was twisting. The surgeon said that the tissue was quite damaged so he could see that it had been going on for a long time. Anyway, they took out about 25% of my large intestine. Recovery was long & the fatique continued. I had 2 more surgeries after for adhesion problems. I have been diagnosed with Acid Reflux Disease (years ago). Last year, I had an Endoscopy & they said that I have Barrett's esophogus. About 2 years ago, I had surgery on my face for basal cell cancer. Again, after the surgery, I just never seemed to recover any energy. I have other symptoms as well, back pain, neck pain, swollen lymph nodes in my neck, migraine headaches, fuzzy head (I have seen referred to as brain fog), low grade fever alot of the time, inflammed & bleeding gums, pain in my left hip, right shoulder and knee, swollen hands, fingers, and feet, reddish-purple spots on lower legs & arms (exposed to the sun most). I think that is the general symptoms. About 6 months ago, I had a period of vertigo for about 2 weeks. After that passed, I had pain around my right eye. My GP sent me immediately for MRI & MRA of the Brain and eye. She suspected an aneurism. Thank God, that came back O.K., no anerism or tumor. However, I continued to be plaqued with the pain, as well as the other symptoms. She first referred me to an Opthomologist who said that my eye was fine. She then referred me to a neurologist. He didn't know what was wrong with me but prescribed Prednisone. It was amazing! My symptoms completely disappeared within 2 days. I felt better than I had felt in 20 years :) He started me on 30 mg per day & reduced it every week. When I got to 15 mg. per day, the symptoms returned. The lower the doseage got, the worse I felt. When I went back to see him, he referred me to Mayo Clinic in Jacksonville. I had appointments with an Internist, 2 Opthomologists, and finally, a Rheumatologist. They ran alot of tests. My ANA came back slightly elevated. That was the only result that was outside of the "normal" range. I have not been definatively diagnosed but Lupus is a concern. The Rheumy agreed to increase the doseage of Prednisone to 20 mg. a day for a month, then 15, then 10, etc.
He also prescribed Lyrica, which I just started taking. I feel better, although not as good as I did on 30 mg. of Prednisone. I have to go back to Mayo to the Rheumy in 3 months. He is referring to a neurologist there too. He said something about a nerve test? Anyway, I feel better just knowing what may be wrong with me. After reading everything about Lupus, I finally feel like we may be on the right track. At least, maybe I am not crazy :)

11-19-2008, 01:02 PM
Hi Jen,
Welcome to the site. My name is Kathy and I have SLE Lupus and have had it most of my life, but I did not get diagnosed until I was 36, because for years the doctors would not listen to me and take me seriously and test me for it. I guess a lot of it had to do with the fact that in my case the disease was mild until I got the Chickenpox at the age of 35 and that is when it got bad and the Sjogrens decided to present itself as well.

It sounds like the Rheumatologist may suspect that you may have some Neuropathy going on as well is why he mentioned about the nerve test. I have Neuropathy and have been through the test. It is not that bad to go through.

I hope that you get some answers and very soon about what is going on. There are a lot of nice folks that come in here and they have some really good information that may help you. Please keep posting.


11-19-2008, 03:43 PM
Thanks. I know what you mean about having it for years & no diagnosis. In fairness, I guess it is hard since it seems everyone has so many different symptoms. In my case, I never connected the different things going on. It was baffling! It sounds like you have got it really bad with lots of other stuff. I hope that you have a good DR. I have also noticed my hair is thinner. It was always so thick that it has just become noticeable, especially along the hairline. An odd thing is there is new (shorter) hair coming in. Is this associated with Lupus or the meds? Just wondering if anyone else has seen this? Thanks again for your support.

11-19-2008, 05:00 PM
Hi Jenny

Welcome to the site. quiet a few of the board members have lost their hair at different times for different reasons...good news is for most the hair has grown back.

I've been on the losing end, but not so much of the growing back. Keeping my fingers crossed and hope it does.

I'm not on any medication that would cause hair loss and I'm not sure of the reason for mine.

I'm not fully diagnosed yet. My sister has lupus and mother had it.

I have had many of the symptoms since I was 19 yrs old.

This is a very friendly and warm site, glad you found us.

I'm sure some of the other members will be able to give you more information about medication and hairloss than I have.

11-19-2008, 05:45 PM
Hi Jen,
I have a very good doctor, but you know there is no cure for Lupus and basically they can only treat the symptoms and hope for the best. I have had Lupus for most of my life and well, I, myself think that the Lupus caused me to get the Megaloblastic (Pernicious Anemia) by damaging the Parietal cells in my stomach and intestines, so that now I can no longer produce Intrinsic Factor. Without the Intrinsic Factor I am unable to absorb vitamin B12, so I have to give myself a B12 shot every month for the rest of my life. I have these other problems that are not really related to the Lupus and well I just do the best that I can. Sometimes it is very rough, but it is just the way that it is.

I use to have really thick hair, but it has thinned out some and I have not lost anymore hair in a long time. I hope that your hair comes back in soon. I hope that you get to feeling better.


11-19-2008, 09:19 PM
Hi Jen;
You've been warmly welcomed and given good advice and information from some of our members. I agree with Kathy that your doctors may suspect some form of nerve damage with your illness, which could very well be Lupus.
Hair loss is something that many of us (including me) have dealt with and it is due more to the disease itself, than to medications. As SITC advised, the hair usually always grows back (hence, the new growth that you are seeing). Do not be surprised if the new hair does not, in any way, resemble your former head of hair. That seems to be the vast majority of cases where the new hair is a different grade, thickness and texture.
Also, it often happens that when Prednisone is tapered, symptoms re-appear. Doctors do not like for patients to be on a high dosage of Prednisone for extended periods of time. However, many Lupus patients have found that they have to remain on a maintenance dosage for months and years. Often, doctors will often prescribe another immunosuppressant drug along with the Prednisone to keep the corticosteroid (Prednisone) dose low while still suppressing the immune system and thus alleviating symptoms. Perhaps you can ask your doctor about some of these immunosuppressant drugs that can be used in addition to the Prednisone while tapering:
* cyclophosphamide ( Cytoxan )
* Azathioprine and mycophenolate mofetil (MMF)
* Methotrexate
* MMF (mycophenolate mofetil)
* Cyclosporin and tacrolimus

Once again...welcome to our family and know that we are always here to help you.

Peace and Blessings

sick n tired
11-20-2008, 09:39 PM
Hey Jenny,


No you are not crazy...I know how that can feel..I even had a rheumotologist tell me that he liked to refer to my illness as "crazy woman's disease" chuckle,chuckle...I was so upset when I left I vowed never to go to another rheumotologist...but my friend found another one and talked me into seeing him...I am glad that I did.

I am on prednisone...I hate the tapering off part, but it is imperitive for us to be on as low a dosage as possible. Right now my doc is trying to find a happy medium..

11-20-2008, 11:39 PM
Hi Jenny..

Welcoming you with a tight hug..

Maybe? Maybe you are not crazy? You are not!

I am happy to know they are treating your symptoms without a diagnose. I feel that is important.

Tomorrow is a new day to enjoy...I hope you can.

Hugs. Be well.