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Is is lupus?

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Posted 6/18/2007 10:37 AM (GMT 0)
Hi, I'm an 18 year old girl and my rheumy thinks that I have lupus. I have perpetually swollen ankles which has been like this for 7 months. They are painful at times. They look fine in the morning when I wake up but start to swell as the day goes and become quite swollen at night before I sleep. They also swell up when I take a shower. I have occasional pain in my knees and muscle aches here and there.

My rheumy did several tests, my ANA test was a high positive (1:800) but I was tested negative for anti DS DNA. The ENA test was then run and I have a result that says Indeterminate for Anti Ro which my rheumy says is positive. The rest of it were all normal (negative). My urine test was also normal.

I would like more opinions so do you guys think it's lupus?

Posted 6/18/2007 10:47 AM (GMT 0)
Hi Ispakles, welcome to the group! It's very hard to come up with a DX for lupus. The first indicator is the possitive ANA. but even than some people with lupus have a pos and some have a neg. I do get that swelling in my legs from my toes to just below my knee caps and my legs turn bright red.
All you can do is continue to see the rheumy and as time goes by they will notice other tell tell signs. In the mean time I hope that they are at least treating your symptoms. and not making you continue to suffer like this.
again welcome to the group
hugs
carol
Posted 6/18/2007 10:59 AM (GMT 0)
Hi Carol. Thanks for the reply. My rheumy has put me on Plaquenil, Seatone Advance Joint Formula and prednisolone(5mg) for 2 weeks. I just started prednisolone for 3 days. No improvement as of now. I've heard about the various side effects of it and I'm worried that I might get them. Are they temporary? Did you experience any side effect taking these drugs?

Lynn.
Posted 6/18/2007 11:46 AM (GMT 0)

Hi Lynn, I havn't taken prednisolone but I am going to assume it's pretty much like prednisone. I have had the side effects from it. Like swollen face and weight gain. but that usually happens in higher doses and long term use. but yes those things are reversable when you stop using it. Prednisone is very bad for your bones though. alot of people here couldn't get up in the morning without it so it is a wonderful drug it's just to bad about the side effects. as for the plaquenil That takes a long time to feel any effects from it what so ever. It kind of reminds me of taking vitamins. You kind of think they are helping but not sure. Than you stop taking them and realize just how much they were working for ya. I have been on plaq. for 7 months now and it is just finallly started making me feel a bit better.

The pred. should start taking the pain away if you have inflmation in your joints. I'm glad your doctor is treating the symptoms anyway. Hopfully he will get a better idea what is going on with you soon.

hugs

carol

Posted 6/18/2007 1:55 PM (GMT 0)
Hi Lynn and welcome. I'm really sorry you are having to deal with this kind of illness at such a young age. The bloodwork and the symptoms you mentioned are all present in lupus, but like Carol said, it is difficult to diagnose and some people have to wait years for a diagnosis. I don't know how much you have read about lupus, but there are some clickable links in my signature to some good information on lupus including the diagnositic criteria docs use to diagnose it. I'm glad the rheumy started treating your symptoms. Like Carol said, plaquenil can take up to six months (or sometimes longer) to build up in your system enough to really notice the effects of it. If prednisolone is like prednisone, you may not be on a high enough dose for it to be helping. I know if I go below 7.5mg of prednisone, all my old symptoms come back. Anywhere from 15mg (when I'm flaring) to 7.5 seems to work the best for me. Everyone is different though. However, when you are on an effective does, it usually helps your symptoms improve pretty quickly - within one to two days. It might be a good idea to call your rheumy and let him know that the 5mg doesn't seem to be working and that you aren't feeling any better. I'm glad you found this site. We have a great group of people here. Please ask any questions you have and also know that we are here for you if you are going through a rough time. Take care
Posted 6/18/2007 2:42 PM (GMT 0)
Hi Lynn,

I wanted to add my welcome. I'm so sorry to hear that you are having problems so young. I'm on Plaquenil and Carol and Hippi are right when they said it can take a while to notice any affects on it. Its making a big difference to me. I only have the anti-Ro antibodies (very high positive on those) at this time too which are tricky because they can point to Lupus and/or Sjogren's so makes diagnosis even harder. I'm glad to hear that your rheumy is treating you for your symptoms so you don't have to suffer too much in the mean time.

Take Care
Posted 6/19/2007 2:34 PM (GMT 0)
Hi, I just called my rheumy and he told me to try taking 2 doses of prednisolone a day, once in the morning and one at night(10mg in total a day) I'm just concerned about the side effects. Is 10 mg a high dose? Would it can many side effects?
Posted 6/20/2007 1:21 AM (GMT 0)
Again, I'm not sure if prenisolone is the same thing as prednisone, but I'm guessing they are similar. If so, then 10mg is still considered a fairly low dose. The one thing you might notice with your dose later in the day is that it might interfere with your sleep. It can make you feel a little wired which may make sleep more difficult. If you have trouble sleeping, you may want to let your doc know and maybe get something to help you fall asleep. I hope the increase in meds helps your symptoms. Take care
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