View Full Version : More questions than answers

09-09-2003, 11:48 AM
Is it possible to have lupus with a negative ana? I was diagonosed with hemolytic anemia during my early 20's. My last acute hemolytic event occured after the birth of my son. My blood count dropped to 4.0. In the last four years I have developed arthritis. I also have acute adominal pain and have had dozens of tests and procedures. Recently (this year) I have begun to experience extreme fatigue. I have been told because I have a neg ana, and I don't have the butterfly rash, I'm not a lupus canidate. Today I decided to read a bit about lupus. I knew about the connection with anemia & fatigue. Imagine how suprising it was to find that the dry eyes my opthomoligist has been treating me for and the dry skin the dermatoligist is treating, and the memory loss my family has begun to tease me about (early onset alzheimers they call it) and the freezing cold hands and sudden numbness and whitening in my fingers that I attributed to poor circulation, the persistant mouth sores that the dentist told me to take lysine for, and the horizontal ridges in my finger nails are all on the symptom list! Once a Gp reffered me to a nuerologist who diagnosed acute muscle wasting in my hands and contributed it to carpal tunnel though he was suprised since I was 29 and had no history of repetitive motion. I don't know whether to be shocked or comforted by the fact that I'm just one among hundreds of simular stories. I have felt like a hypochondriac, but the last thing I want to be is sick. I have an exciting active life. I just want to feel good enough to enjoy it, or maybe just to not feel like I'm crazy. So, about the rash, do you have it all the time? Everytime you get sick? Is it possible to have lupus and not have a butterfly rash? Once when I was 16 I got this thick red splotch that covered one whole side of my face. It happened after I had taken some kids I was babysitting to the pool for the afternoon. It was really hot to the touch and almost so red as to look purple. My mom thought it was an allergic reaction. It lasted for several weeks but I never saw a Doctor. Anyway, I hadn't thought about it since until today. I've never listed all these symptoms to my doctor because I had no idea they could be related. The truth is I would feel uncomfortable doing so... even now. All I can think of to say is "help", but that seems silly...so I'll just close with a "thanks for listening".

09-09-2003, 10:57 PM
I was diagnosed with lupus in December 2002. However, my symptoms began right after the birth of my daughter in April 2002. My ANA was negative for several months before my diagnosis. My recent tests show that my ANA is negative again. Nonetheless, I am still affected by lupus symptoms (discoid rash on torso, arthritis in hands and knees, fatigue, pleurisy...). I have never had the butterfly rash. So in my humble opinion, you can have lupus without positive ANA and butterfly rash.

I am almost finished chemo treatment for kidney disease. Anyone experienced cyclophosphamide?

09-11-2003, 09:17 AM
Welcome to our forum! I hope that we are able to help you or to at least give you a place where you can talk to others who understand your disease and can give you emotional support :D
Here is what I've found out about CYCLOPHOSPHAMIDE (aka: Endoxana): This is a chemotherapy that is given as a treatment for some types of cancer (mostly leukaemian known as lymphocytic leukaemia, lymphomas, ovarian cancer and bladder cancer). It is generally a clear fluid after being dissovled from a powder - it is also available as pink or white tablets of 50mg. It is given as an injection through a fine tube inserted into the vein. It may be given into a vein near the collarbone. It is prescribed for conditions other than cancer (such as LUPUS) and, therefore, given in lower doses. Some of the side effects will probably not occur on low dose usage. Always take your tables at the right times and as directed by your doctor. Do not flush unused tablets down the toilet, return them to your doctor. Do not change dosage without your docto's permission. If you forget a dose - DO NOT take a double dose. Let your doctor know and keep to your regular dose schedule.
Some of the side effects are: A)Temporary reduction in the production of blood cells by the bone marrow resulting in anemia, risk of bruising or bleeding or infection. This side effect usually begins 7 days after treatment has been given. If your temperature goes above 100.5 or if you have unexplained bruising or bleeding, or you feel suddenly sick (even with normal temperature), you should contact your doctor immediately. B)Nausea and vomitting beginning several hours after treament and lasting from 24 hours to a few days. C) Loss of appetite D) Irritation of the bladder lining. It is important to drink plenty of fluids to help prevent any irritation. If you notice blood in your urine, notify your doctor. If you are taking a high dosage of Cyclophosphamide, doctors will give you fluid in your vein along with a drug called MESNA which will help to prevent bladder irritation. E) Hair loss, usally starting 3-4 weeks after the first dose of cyclophosphamide (it may occur earlier). Hair loss may be complete or just thinning, you may have thinning or loss of eyelashes, eyebrows and other body hair. This is temporary and all hair will regrow once the treatment is finished F) changes in the way that you liver functions G) Sore mouth and taste changes. Again, drink plenty of fluids H) Diarrhoea I) Changes in your nails, they may become darker or ridged J) skin may darken (this is rare) K) Changes in you lung tissue - tell your doctor if you notice any cough or breathlessnes. L) hot flashes, dizziness, blocked nose and a strange taste. All of these side effects are not experienced by everyone using Cyclophosphamide. The length of time that you use it varies with the condition for which it is used and the dosage.
I hope that I have been Helpful
Peace and Blessings

10-06-2003, 01:59 PM

I was just at my support group today and one woman in the group has a negative ANA and we were discussing that with Lupus, the blood work doesn't always follow the disease. I am not saying you have lupus because there are a few auto-immune diseases that have similar symptoms but your symptoms are suspect. I have heard of people that waited 10-15 years before a solid diagnosis - you are not alone in that. It took about 5 years for me.

You need to see a rheumatologist to see if you have an auto-immune disease such as Lupus. Well, that's what I would do anyway. But yes, it is possible and they are discovering that it is not completely uncommon to have a negative ANA. List all of your symptoms, put it all together and take it to your doctor, give them time to look it all over and ask for an opinion from a specialist. That's all I can think of.

Good luck to you!!!