New to the board

Hello

A little about me :)

I'm a 48 yr old female in Nova Scotia. I've shown symptoms for lupus since I was 18. My mother had it and my sister was diagnosed 17 yrs ago. I have the butterfly rash amongst other rashes. Arthritis has taken over most of my joints. I break out in sunblisters...achy sore tired swollen...a mess :)

I'm in the middle of the mess of getting diagnosed. I've had a positive ANA test, followed by a boarder line ANA test, followed by a negative test.

I'm not getting on well with my current rhuemy. I have one more appointment with her, it has to get me through to my next appointment with my new rhuemy which isn't untill november. I almost cried when I heard that!

I'm on plaquenil since December. It's not doing anything for me. I'm also taking arthrotec 75, and that had worked well for the past year, but it has suddenly stopped helping me. The pain and the swelling is back big time.

Well I'll stop there...I have a habit of rambling. Looking forward to reading the posts here :)

Thanks redrose,

I like the idea of calling the rhuemy office for cancelations, never thought of that. My sister is just coming out of remission. I had to talk her into going back to our family doctor. I think she wants to pretend it will just go away.

I feel badly for her. She's been pain free for many years now, and it's tough for her to accept that it's over. She needs to find a rhuemy.

I have an appointment tomorrow with my family doctor. She's the one who put me on the arthrotec so I'll let her know it's not doing it's "thing" anymore. See what she says.

I have an appointment with a dermatologist in June about (ewww) toe nail infection, brought on by medication. Is it okay to spring all my other rashes on him?

The pain and anti swelling rubs do not work well for me. They eat my skin off with out getting rid of the pain and the swelling.

I wear compression socks but I'm concerned about what that's doing to my skin and my veins.

Hi Corner . . . welcome to the forum. I hope you'll keep us posted on your progress. Sorry you have such a wait for new rheumy . . . good rheumyies usually do have a long wait . . . but Nov really is long. There are some great tips from members in the "lupus resources" thread. Link is at the bottom of my signature. Blessings!

Hi Corner,

    The others had some great advice for you. I just wanted to welcome you to the forum and wish you well.

    Hopefully, your doctor will find the right mix of meds to help you feel better soon. Hang in there and take care. You will be in my thoughts and prayers.

                                                       Babs

Thanks all for the welcom. Certain is a friendly and a supportive site

 

I had a visit with my family doctor yesterday. The swelling and the pain has been getting worse so I thought I should go see her.

 

Sigh...as usually things didn't go the way I thought they would.

 

 

I've been working out trying to get some of the strength back. she said my swelling is from the work out, but to keep it up.

 

I'm not doing high impact stuff so I'll guess I'll tough it out. I do not over do.

 

She was angry when she heard who my new rhuemy was going to be....sigh...she advised me not to see her and to stick with my current rhuemy who doesn't believe that lupus is real, period.

 

She said she would keep an eye on my ANA, but my results are coming back in the clear.

 

I'm frustrated, not sure what my next step is going to be.

 

I'll show off my rashes to the skin guy. Gawd what a job.

 

Hey doc, what do ya think of this....

 

Wonder how many times they want to say EeeeEEeew ick gross hahahaha.

I am sorry your appt didn't go well. It is so frustrating to go to doctor after doctor that doesn't listen to you. Are you going to see the other rheumy? If your current rheumy doesn't believe lupus is real I would RUN to the new doctor whether your family doctor likes it or not. I am sorry for being so blunt but it's your health not theirs and you have the right to get a second opinion!

((((( hugs )))))) I pray you get some answers soon and begin to feel better! Keep us updated on how you are doing!

Hi corner, What dose of plaquenil are you taking? I had to ramp up to 600mg to get the most effective dose. This is way safer than taking some of the other meds that would be the next step. I also need to take around the clock anti-inflammatories (there are many choices for this one). I thought the plaquenil wasn't working and after being off of it for a while, my issues came roaring back. Many of the other members have had the same experience. I hope your next rheumy appointment goes better. Some hot tea for you!! Blessings!

Hi SITC and welcome to our forum. I've been on 400mg plaquenil daily for over two years, and yes, it took 4-5 months before I started feeling somewhat better. It is the safest drug in our arsenal and although I've had to resort to more heavy duty drugs, I still take my plaqenil If I run out a few days-I feel much worse. I also take Arthritis Tylenol daily and get some noticable relief.  If you read my signature you will see I'm a walking pharmacy, but I started on plaquenil.  I really hope you get some help soon!  Love, Butterflake

SITC . . . usually plaquenil comes in 200 mg tablets. Are you taking 2 a day? = 400 mg??? or two 100 mg tablets?? The average dosing for plaquenil is 400 mg. But some of us take 600 mg. 200 isn't much if you are still having so much pain. If your arthrotec is causing swelling, there are SO many other anti-inflammitories to choose from. Your doctor can help you pick another one. You may have to try 5 or 6 before you find "the one" that helps yo most. I've tried several and it turned out that ibuprofen worked better for me than some prescript ion meds. We are all very different. Hang in there and keep the doctor updated on your progress or lack of progress. A good doctor will help you tweak things till you've got a good outcome. But you really need to speak up. Blessings!

It's two 200gm pills so 400gm daily. There's no coating. Hahahaha I learned after the first pill to down it as fast as possible. I't plaquenil.

As far as the anti inflammitories...I've tried quite a few. Most of them would work for a day maybe two then right back to the swelling. One just made the fluid slump down around my ankle. Looked like each ankle was going swimming with it's own little inner tube.

I elivate my legs at a 90 degree angle for 10 minutes several times a day...I wear compression socks, Ice/heat freaquently.

The arthrotec worked pretty well for the past year, but the parties over now. I see my rhuemy in a week or so. I give up trying to figure her out.

I've decided to tell her I'm coming off the plaquenil. I'm not interested in taking anything else.

I just found out two weeks ago that my mother knew she had lupus. I had always assumed that she didn't know and wasn't being treated. But my sister dropped the bomb that mom did know. And she was being treated with prednisone. She died suddenly.

We asked for an autopys. I thought we had it done cause no one knew what was wrong with her. Turns out I was the only one who didn't know. After we got the report, my sister took it to her family doctor, who had her tested for lupus.

And now I'm being investigated...I was fine up till two years ago. I went through a very stessfull period and after that I just started falling apart. It's been a long painful two years of tests and trying medications...and nothing works and then my stupid rhuemy (who put me on the plaquenil) says she's not treating me for lupus. I asked if she thought I had rhuematoid arthritis or malaria...she just sat there looking at me. Finally she said " I just thought it would help" Grrrrrrrrrr

I've been on it since Dec 1rst. I'm worse not better.

Sorry ... didn't mean to ramble...sigh.