The Lupus Forum banner

1 - 5 of 5 Posts

·
Registered
Joined
·
191 Posts
Discussion Starter #1
:mad:

I was discharged from Rheumy last july having been put on plaquenil and advised that 48% of people with my symptoms might develop more withing a year or two and have to go back & poss end up with a diagnosis. (currently I have meds for a not definate or defined connective tissue syndrome).

Last Oct I started with sores and spots all over my throat. This has continued. Recently my jpoints have been getting sore again so I went back to GP who has put me on an NSAID whose name I can't remember, but it has been good. Yesterday I went kayaking for the first time in 11 years. It was good fun and I can still do it! I hurt today though - but don't know if its just coz I rediscovered long lost muscles or if its made things worse.

Anyway, sorry, I'm waffling. My Rheumy appt is not till mid June. The meds my GP gave me have helped a lot. I'm wondering if I should cancel because things are a bit more settled again. I'm guessing if I'm ok at the time all the tests will come back negative anyway. What do you think?

Wendy
 

·
Registered
Joined
·
7,800 Posts
Hello,

I certainly wouldn't cancel your appointment!! Appointments are hard enough to get and, in any case, you need to be monitored even if things remain relatively stable.

Bloods are often not representative of how you "feel". They may or may not be negative. What is important is that you are being treated and it is recognised that you have some sort of connective tissue disorder.

On top of the above it is important to remember that the only predictable thing about connective tissue diseases is their unpredictability. You have no idea when it may be worse/better and you do need that monitoring.

Keep your appointment even if you are still doing well - and I hope you will continue to be :)

Katharine
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
Wendy,
I would keep the appointment as if it is lupus meds may have to be adjusted given the season coming up on us. It is good that you are feeling better but things can change in a matter of minutes with us. Even if you are fine at your appointment there are things that can be done to make sure that it stays that way as long as it can. I am sure they will want labs again. I do hope that you find an answer to the problem soon as the sooner you have a name it makes it easier to handle and know the does and don't for the problem.
 

·
Registered
Joined
·
191 Posts
Discussion Starter #4
Thanks guys.

I've decided I will write down why I went back to GP in case all is well then so I don't feel like such a time waster.

Wendy
 

·
Administrator
Joined
·
7,566 Posts
Hello Wendy

Just wanted to add, that I agree with the others, don't cancel your appt. Things can change so quickly, and your rheumy needs to know about your new symptoms. Who knows what your bloods may show, sometimes we get used to how ill we feel all the time and just accept that as normal. Just make sure to keep a note of all your symptoms. I hope that you carry on feeling so well.

Deb
 
1 - 5 of 5 Posts
Top