Lupus?

[Aprilbo]

I broke out in a rash of small red nodules on my lower legs several weeks ago. It was diagnosed as erythema nodosum. After about 4 weeks of pretty sevear pain and swelling, I asked my GP for some steroids. The pain immediately stopped and no new nodules formed.

I was done with the prednisone on Saturday. I spent Sunday outside in the sun and had a new nodule the next day. Today is Wed. and I have about 6 more. They are mainly on my left leg and foot (most were on the right last time) and I have one in my wrist. The doctor is telling me that it is being caused by some medication that I am taking, however, I am was only taking Zoloft (been on it for years) and zyrtec at this last onset.

I have a positive ANA, but the doctor says the antibody titer is low so he does not suspect lupus. I just talked to someone with lupus and her sypmtoms are the same as mine and her antibody titer was low too. My sed rate is also low- so no indication of inflamation from that- although these angry red knots on my legs sure look like inflamation to me.

I just don't know what to do and the doctor's are not helping at all. My GP's office won't even call me back. I did finally call the urologist that I saw for the first time a week ago but I don't know if he will do anything.

The pain in my joints and in the knots is so intense that it wakes me up at night and I just feel like crying when I have to get out of bed. I can hardly lift my 2 year old.

I'm also having weird neuromuscular pain. Pain in my hips and butt- and of course my raw bladder is killing me too. I couldn't take atterax b/c it made me have spasms so bad I couldn't even pee. I'm just really getting discouraged. If it's not one thing, it's another and I am just running up on my 30th birthday in a little less than a month. I just keep thinking, am I going to have to live the rest of my life in this pain? How am I going to be able to properly take care of my child?

Anyway, I've gotten off track. If anyone with lupus can give me any info or if anyone has any other ideas I'd sure appreciate it.

Thanks,

April :loco:

[Betsie]

I would feel frustrated and discouraged too. I am sending you a link for more information...browse through...if you google Lupus symptoms you will also find various suoort groups...I will assume you don;t have it and just maybe you find some symptom information...perhaps it mimics other things...a positive ANA-has Lymes disease been discussed? Okay, best wishes to you and I hope you cheer up soon.

http://www.lupus.org/education/overview.html

[jrowley]

Have you tried contacting a rhumetoligist yet they are the doctor that treats lupus and if you have a positive ana they i would seek one out as it could be several autoimmune diseases. Also if you are having that much pain in your legs and it is keeping you up or waking you then I would suggest a sleep test to rule out restless leg syndrome and periodic limb movement. But positive ana means there is something going on with you and seeking out a specialist in the field would be a good idea. In lupus you need to have something like 6 or 8 of the several symptoms before they will give you the diagnoses of it, however you can have lupus with out dx for several years before any more of the symptoms show. Good luck. I suffer severe rls and am going through several test to rule out other neuro-musclular diseases as the typical meds for rls just made things worse rather than helping. My doctor says that I am so severe he doesnt want to take any chances and sent me to a neuro for a emg that will test the nerves and how impulses are carried to my muscle. Hopefully something will be figured out on it as I have been dealing with doctors on this since Oct and I am getting exhausted from the lack of sleep and the pain I am in 24/7. Good luck again

[sarahjth]

I think I have erythema nodosum too.

I am so tired of being sick!

It is on my back- so it is very hard to sleep because of the pain. I am going to the Dr. but I am almost positive I have erythema nodosum. :confused:

[ICNDonna]

It sounds like you have some concerns about what your doctor is telling you --- my suggestion would have to be to get a second opinion from another doctor who is not in the same office practice as your current one.

I hope you get some answers soon.

Warm healing thoughts,
Donna

[Aprilbo]

I would go to the doc asap. If you take steroids and the nodules and pain stop almost immediately, then it's probably eurythema nodosum. I didn't have it on my back, just my limbs. I'm sorry you are having such a rough time. I know how bad it hurts. I remember crying when I moved I was in so much pain.

I hope you get better soon.

April

[alianne]

I was diagnosed with lupus in January and was tried out on a lot of the medications for it - laquenel, prednisone even gving myself torodol shots to help the swlling around the lungs and heart ... now I am on methotrexate which is a chemotherepy drug which is supposed to help my immune system chill out some. I always throw up a few times and and very sick and tired for about 2 days after, now I am bruising really bad too, and getting mouth sores. But the thing that is bugging me most is that all of the sudden I have horrible bladder pain which had been under control before a couple weeks ago. I am wondering if the chemo is making my bladder hurt - or something? I go see the rhumatologist next week, just wondering if anyone else has experience with being on this drug while having Ic and it it made things worse?