Great news!! :)

I took Caitlin in to see the rheumatologist earlier than her planned appointment last week due to quite a few symptoms she was having. Caitlin was really wanting to go off the Plaquenil because she feels like this is causing visual problems for her. Her rheumatologist thinks she is having ocular migraines without the actual headache. The strange thing is that they come in clusters...she'll have like 4-8 one month then she won't have any for a few months. She also has had constant mouth sores & joint pain to where she takes OTC meds everyday for. Her platelet count has been wonderful so ITP has not been an issue for her. We just got all the results in and they have proven us wrong! All bloodwork is NORMAL except for her wbc. (dsdna, c3 complement, c4 complement, etc.) I really have no idea why she is all of a sudden having so much joint pain. It really could be all from cheerleading, but I don't know why all of a sudden now when she isn't really doing anything new. The mouth sores...I guess anyone can get those and she gets them mostly when she is really stressed. I just wish we could prevent these ocular migraines from happening. The last one happened right before she was going on the floor for a competition and she completely freaked out back stage. She is so experienced that she was able to perform her routine "blindly", but then she was throwing up afterwards because it was too much for her. We saw her hematologist yesterday and we discussed the results. He wants her to stay on the Plaquenil because he said things may be good now, but they could change. (Darn, was hoping for one less med to worry about because I have to physically take the pill to her for her to take it!) She was prescribed 500 mg Naproxen twice a day to see if that helps her get through the joint pain. (I haven't filled it yet though.)

Pauline:

I am SO glad to hear from you! It's been a while.

I hate to say it, but I have to agree with the hematologist though. Her blood work is most likely good because of Plaquenil. That's what it does....inhibits antibody production. My blood work also got much better when I was on Plaquenil for a while, although some symptoms never really did get better and some have gotten worse. Mouth sores are common with Lupus.

If she stops Plaquenil, the antibodies could start back up and those can cause damage to organs and tissues.

I also take 1,000 mg's of Naproxen daily and have for years. It was the only thing that made a small dent in the joint/muscle pain. Prednisone also helps a lot. I can't seem to get off of that!

I'm not sure if Plaquenil would cause the occular migraines or not. I've never had one, but my son gets them and they are scary. He usually loses the vision in one eye for a good 20 minutes, then sometimes gets a headache. He's been to an opthamologist and neurologist and neither can find a cause. Just one of those things.

I'm sorry to say all this, but I always told you I'd give it to you straight. How have you been?

Antimalarials decrease the inflammation by affecting cells of the immune system in multiple ways. There is some laboratory evidence that they may influence the production of the damaging auto-antibodies.

Many patients with lupus are very sensitive to sunlight, which can cause disease flares. Antimalarials have been found to enter cells in the skin and protect the body from the damaging effects of sunlight. This might be particularly important for lupus skin disease. They may have other beneficial effects, like lowering cholesterol (LDL-cholesterol) and making the blood slightly thinner by affecting certain blood cells calls platelets.

Antimalarials have been used in lupus patients to control skin rashes and joint symptoms. Although they are not very useful in treating more severe complications such as kidney disease, they have been shown to be effective in treating the following conditions:

Arthritis and joint pain.
Skin rashes, including the severe forms of discoid lupus and subacute cutaneous lupus. Half the patients will have improvement of their skin problems with the use of Hydroxychloroquine (Plaquenil). Chloroquine (Aralen) and Quinacrine (Atabrine) are probably stronger but may cause more side effects. Occasionally, doctors use combinations of these drugs to treat resistant skin rashes.
Inflammation of the lining around the heart (pericarditis) and the lungs (pleuritis).
Fatigue and fevers.
Maintenance therapy. Long term use of Hydroxychloroquine (Plaquenil) has been shown to prevent lupus flares.

www.lupusalliance.org/content.asp?id=23

tacmom wrote: Her rheumatologist thinks she is having ocular migraines without the actual headache. The strange thing is that they come in clusters...she'll have like 4-8 one month then she won't have any for a few months. ...............

Pauline I know I'm not part of the lupus gang but I just wanted to tell you I have ocular migraines and have NEVER had a headache with any of them.

There is a retinal migraine which can cause pain - supposedly a retinal migraine is rare.

I started having ocular migraines in the last two years, I've only had maybe 4 of them and they seem really random. No pain, a hole in my vision that is sort of like a clear kaleidoscope, lasts a couple of hours. It's weird and I'm glad I read about them or it would have been really scary the first time.
Erica

Now that I'm thinking about it, my son's ocular migraines always seemed to come on when he was either over-heated or in very cold weather. He had one once when he was driving and had to pull over and wait it out. He's also had a few at work and had to stop what he was doing.....loading a UPS truck.

The only thing we've been able to associate Caitlin's (and mine) ocular migraines to is swift change in temperature, high stress, or overheating. She mostly gets them when it is hot outside and she goes into a cold building or vice versa.

Thanks Sandi...for always being straightforward! We need to hear that sometimes! I hear it is a a mom, but Caitlin doesn't hear it as a teenager! I have explained the reasoning on why she needs to stay on the Plaquenil, but her philosophy right now is...why can't we just take meds when we need them? She doesn't look at it from the "preventative" side of it. I guess that is just a typical teen!

I've been doing great! My older daughter is driving now so it has taken alot of "taxi mom" responsibilities off of me. I worry and miss them more, but it gives me time to try to focus on eating a little healthier and work out some. I am still enjoying watching both girls do well in cheer. I've got two that will graduate back to back so we will start looking into colleges starting this summer to give them some ideas of where they want to go. Tiffany (my 16 year old) has no idea what she wants to do. Caitlin is determined to be a college cheerleader at either TCU or OU and she thinks she wants to be a nurse, but is not positive yet. So, all is well! I hope all is going well for you as well and you are finding more time to enjoy your hobbies!

Tell Caitlin to call me, I'll straighten her out! Seriously though, if there is any drug that is crucial to controlling Lupus, it's Plaquenil. That is the one constant that shouldn't stop unless eye problems develop (detached retina, etc.). The dsDNA is an antibody that can cause kidney damage, so you want to keep those antibodies normal. It's especially important if her symptoms are increasing. It could also be the reason that her ITP is in remission. Mine have been fine too since I've been on Plaquenil. If it inhibits antibodies, it might also work for anti-platelet antibodies. Not for everyone, but for some. She needs to understand that yes, it is preventative.

I'm so glad to hear that you are doing better! More time to yourself is a good thing!