The Lupus Forum banner
1 - 9 of 9 Posts

·
Registered
Joined
·
9 Posts
Discussion Starter · #1 ·
Wednesday, June 29th was my first visit to the Rheumatologist and some additional blood work. Of course it was a symptom free day and I left the office worried that the doc would think I was a hypochondriac. Friday I received a call from her office saying she was on vacation but wanted me to start taking plaquenil and that my results showed high positive for SSARo and it was a marker for sjogrens. My Mom had that and didn't experience what I'm going through so I'm still inclined to think it might be Lupus. I go back to the doc on August 15th. I don't know if I have an official diagnosis yet of anything and was wondering if it's common for them to prescribe 400 mg of plaquenil without giving a diagnosis. Also since I started taking it I ache in my lower back, hips and thighs constantly, but this could also be a coincidence and just more of what I was experiencing before raising its ugly head again since I've slept for almost 3 days straight and still feel exhausted.
 

·
Registered
Joined
·
442 Posts
Hi Reggie, and welcome to the Lupus site.

It usually takes some time to get a firm diagnosis. Your Rheumatologist obviously suspects something autoimmune is going on, with your positive blood test and symptoms, because she has prescribed Plaquenil.
Plaquenil can take a while to get into your system, often 3 months or even longer. Occasionally, people get an upset stomach with this drug, but that is normally only in the first week or two, like many other medicines. You should get your eyes tested now, and thereafter every year, as there is a very, very rare chance of it damaging your eyes. (My optician says he has come across only one case in 20 years, and that patient had been on Plaquenil for many years, and was elderly)
Plaquenil is very safe, and is the first drug most of us are put on. I've been on it for 6 1/2 years, and it has helped me greatly, especially with my joints/swelling and fatigue.

Take care,

Eileen
 

·
Registered
Joined
·
9 Posts
Discussion Starter · #3 ·
Thank you! I'm glad to hear it works once it's built up in my system and I will definitely schedule an eye appt! Feeling better is the ultimate goal, but there's a part of me that really wants to know this monter's name so I know what I'm fighting.
 

·
Administrator
Joined
·
10,199 Posts
Different antibodies tend to show up more in one disease than another. They can however still be found in others so it can be difficult to diagnose. The fact that your symptoms are different to your Mom's isn't surprising. We all react in our own way. You could also have more than one autoimmune disease complicating things even more. It may just take time for your diagnosis to become clear.

Take care,
Lazylegs
 

·
Registered
Joined
·
9 Posts
Discussion Starter · #5 ·
Thanks! You have a very valid point, I guess I was just assuming since my Mom always experienced the dry eyes and mouth and I haven't yet that it was two different conditions but based on what I've been reading on the forum the overall experience is extremely different from person to person. I really don't want to have anything but I know I don't feel like this for no reason so it must have a name. Hopefully I'll learn more on Aug 15th. Even though I might not have lupus I want to thank everyone for sharing and accepting me to this forum because it's really helping me cope with the unknown.
 

·
Registered
Joined
·
47 Posts
Just popping in to say that my rheumy took a similar route, as well. I'm currently grouped in with the diagnosis of undifferentiated inflammatory arthritis but I'm on plaquenil as well. My doctor also suspects that it's something autoimmune, but she just doesn't know what it is yet.
 

·
Registered
Joined
·
9 Posts
Discussion Starter · #7 ·
I hope to know more August 15th so far I haven't been told much of anything. I feel like the plaquenil is helping me but I know I haven't taken it long enough to feel the full effects. How are you feeling now that you're on it?
 

·
Registered
Joined
·
47 Posts
Plaquenil makes my joint pain less noticeable. I still experience it, it's just more like background noise instead of always being at the forefront of my mind. I also have less photosensitive rashes, though I still have some.

It's not been working so great for me lately, though. I've been flaring a lot more than usual, which makes me think that my dose needs to be increased.

I hope you get some answers soon. I know it can be really frustrating to play the waiting game.
 

·
Registered
Joined
·
356 Posts
Plaquenil makes my joint pain less noticeable. I still experience it, it's just more like background noise instead of always being at the forefront of my mind. I also have less photosensitive rashes, though I still have some.

It's not been working so great for me lately, though. I've been flaring a lot more than usual, which makes me think that my dose needs to be increased.
Mepracrine or quinacrine can be used as a combination therapy I understand if plaquenil alone isnt quite enough. With the increase in pollen that seems to have upset my immune system too.
 
1 - 9 of 9 Posts
Top