[scooter]

Hello,

This is a great site with tons of great information.

I just saw a rheumatologist last week and she put me on Plaquenil due to my symptoms. I started having problems in February with pneumonia that took 2 months of antibiotics to kill. I still have malaise/fatigue...I feel like I have a fever, but my temp is always around 97 or 98. I have chronic lung inflammation and chest pain. I also have antiphospholipid antibodies. I was on an anti-coagulant for both of my pregnancies and I have Raynauds. In April and had a low positive ANA. I also have occasional tingling in my hands. When she examined me she said I had livedo reticularis on my arms. This whole thing is such a nightmare. I have 2 young children and it is so difficult to get through the day. I think people are starting to think I am a hypochondriac. I try not to complain, but I keep getting invited to playdates, dinner, etc. and I keep turning the invites down because it seems overwhelming. My internist told me to take some antidepressants and exercise! He wasn't even slightly sympathetic. Sorry to go on an on. Basically I am wondering if the fact that the rheumatologist put me on Plaquenil means that she thinks I do have a autoimmune condition, or if they give it to people who are chronically ill with other causes. (Hopefully that question makes sense.)

Thanks!

 

[Katharine]

Hello Scooter and welcome

I'm about to rush off to bed - it's half eleven here - but just wanted to try and reply quickly.

Some GOOD rheumatologists will prescribe plaquenil if they suspect lupus or another autoimmune disease even if they cannot give a firm dignosis. Your symptoms would certainly lead your rheumy to believe that something auto-immune is going on and I should think that she has decided to try a trial with plaquenil to see how it goes. You may find that she "diagnoses" you on paper with UTCD (Undifferentiated Connective Tissue Disease).

You need to know however that plaquenil takes a long time to start working properly, often 3-6 months, sometimes longer. It is a baseline drug that is disease modifying, reducing the frequency and severity of flares. It is also extremely safe.

If you are really feeling too bad before it kicks in or if it is not helping enough, do make sure you "complain" as there are many other things that can be added to plaquenil to help more, either shorter or longer term.

It sounds like you have a good rheumy and, for most of us here, our rheumies become our primary carers with other docs for more specific things (such as neuros, lung specialists and so on) and our GP supporting (hopefully) us and coordinating everyone else.

OK, I hope I made sense, I have the most unbelievable headache so I'm going to go and bury myself under the covers and hope it goes away :lol:

take care,
Katharine

 

[LolaLola]

Katherine has given good advice. I am sorry you feel so bad, and I know it is very hard when your children are small.
Plaquenil is certainly well worth a try,many good Rheumatologists try it in "lupus like illness" as it is so safe it is worth taking to see if it helps.

At the moment it is not going to do you any good to push yourself. Okay so called friends may think you are a Hypochondriac but all of us here who have been through this would tell you firmly that pushing yourself does not work!
It can be very hard when people want to jolly you out of it, and trying to explain to them while you are still in turmoil is not likely to succeed.

Sorry if I sound a bit gloomy, I just want you to be sensible.
x Lola

 

[Maia]

Plaquenil is only given to people to treat/prevent malaria and to people with suspected autoimmune conditions or diagnosed autoimmune conditions (to my knowledge). It sounds like you have a pretty good rheumatologist who is willing to try a medication to see if it helps even if he can't quite officially diagnose you with something specific. As Katharine stated, UCTD is a possible diagnosis for you at this point if he hasn't specifically said lupus.

Be warned that it usually takes a minimum of 2-3 months before any real benefit is seen from this drug, and most often about 6 months. In my case it was 9 months before I noticed an improvement.

If you continue to feel very ill, you may want to ask your rheumy if he suspects an autoimmune disease like lupus & if that is the reason for the Plaquenil. If so, then another possibility that might give you more immediate relief would be prednisone although usually that is used to treat joint pain and inflammation in the heart/lung lining. A trial of prednisone is sometimes used to see if an autoimmune disorder is likely, as it typically will produce quick and substantial improvement in pain levels in particular.

 

[scooter]

Thanks for the great information regarding Plaquenil and possible UTCD diagnosis as well as your compassion.

Today I saw the doctor that has been treating me for Chronic Fatigue Syndrome and she said she can no longer treat me because she considers the Plaquenil an autoimmune diagnosis, and since Chronic Fatigue Syndrome is a diagnosis of exclusion, I don't have CFS and legally her hands are tied. I am pretty sad because not only was she a great doc, but she was so sympathetic if felt like I was in therapy too.