1/2 way diagnosed

[finallyheard?]

Hello Everyone,

The Rhummie is treating me with Lupus medications FINALLY!!! I'm still on 10 pred and I've been on 200 mg of plaquenil for a couple of weeks now. He would rather call this a rare form of arthritis that causes brusing and rashes and fatigue and does not show up on lab test rather than call it lupus because my ANA test are normal. Make any sense to you?????? It doesn't to me. He rule out fibro because of my response to the pred. My regular doctor told me not to worry, that it is Lupus and all rhummies are like that because they're so into research they lose common sense in diagnosing. She told me not to worry as long as I was getting the medications that she felt I needed.

My question today is about the parts of me that are deterorating. In particular my joints. Yesterday and today are pretty bad. Worse than it has been in a very long time. My hips, butt, knees and hands are killing me in particular. Can the medication I am on stop the progression of my deterorating joints or will it continue to get worse regardless? :nurse:

[alobreto]

Hi, Lisa! ;)
I'd predict your future (and mine, too!) if ONLY my crystal ball weren't on the blink! :P

It sure would be great if we could have an idea so we could prepare, wouldn't it? Lupus is such a crazy illness, and changes from time to time in the same person.

I think it's likely that your problems will be lessened by continuing to take your prescribed meds. They will probably be better than they would have been without them, anyway.

I DO HOPE that you start feeling better pretty soon! The plaquenil can take several weeks before you get the full effect, so we have to practice patience in some things. I'm glad you're being treated finally!
Regards,
Angela :flowers:

[here]

I have some joints that have deteriation too. It was explained to me that this is more linked to artheritis and not lupus. Lupus does not deteriate your joints.

I am sorry you are having such a time. Hange in there! And, maybe ask your rhemie exactly what you posted here. They should be able to answer that for you.

Goodluck.

[raggedyann1]

finallyheard,

It sounds like you are at least making headway now. I wish he would up your plaquenil to 400mg per day but some doctors just can't be told anything. It will take several months for the plaquenil to kick in.

Here was correct about your joints. Lupus only causes true joint distortion very very rarely. They will hurt like the dickens but are not being damaged. I have had lupus for 16 years mainly with joint problems and have no deterioration from lupus. I do also have RA but it has only caused minimal damage as the meds have kept it under control.

Do you know what your other blood test results were? like the CBC panel, the ENA panel, the complements and the lupus coagulants?

There are many doctors who refuse to dx lupus when the ana is normal.

There is so much research being done these days. My rheumy told me that when the new blood tests get set that there may be more diseases as they will have more information. I imagine that someone like me who has lupus overlap will be given a new disease name sometime in the next few years.

If you are in as much pain as you describe call the doctor and ask for a prescription for a NSAID or something to help control your pain. No one should live in pain these days.

Take care,
Karen

[finallyheard?]

Just to clairify....I am actually on 400 mg of plaq a day. I take 200 mg in am and pm. This week has just been soooo bad and I guess I am just in a panic that my miricle drugs aren't working anymore ;-) I go back to the rummie on the 16th on June so I'll ask him then.

Thanks for your replies.

[Jen79]

I have a lot of joint pain one of my main problems with lupus, you would think with all the pain there would be some loss in the joints. It will problaby take at least 6 months for plaqunil to really start working. I think it took around 8 months before I started seeing results but everyone is different. Maybe when you get on the right meds you will see some relief.