I was recently diagnosed. Not sure if it is primary or secondary. The rheumy put me on 15 mg of prednisone and I just started Plaquil yesterday. I have been on the prednisone for 2 weeks but have only noticed a moderate improvement in my hip pain. Is this normal? Will it just take longer or should I go back to the doc?
Also, trying to figure out if anything triggers the pain. It seems to be random. I can go for long walks (a whole day at an amusement park) and be fine or have intense pain in the evening. Not sure how to proceed. I noticed if I carry anything more than 5 or so pounds my hips hurt a lot. I know symptoms vary from person to person but am wondering if there is any standard.
Make sure you address this at the Rheum's appt, which you hopefully will be making! If this practice has more than one Dr, ask for the Sjogren's specialist. If he does not give you a script for an x-ray or MRI, you should ask for one, rule out joint damage of that bothersome hip.
Oh, wait, you just saw a Rheumy. Seems he is doing what most would do, are you already looking to replace him? I know we want to get better yesterday, but this is a process, and in all fairness after 16 plus years of education, you should give him a chance to do his job if you were just diagnosed! :)
Welcome to the Board! I have a few things that you may find helpful. First, I've been dealing with this for well over 10 years but the diagnosis is fairly new (took forever for them to figure it out). My rheumy made sure I was aware that Plaquenil can take 12-16 weeks to reach full potency. Its in the medical handout that comes with the med too.It really is a process that takes time.
From what I can tell, and what I've learned even since the diagnosis is that strange things can trigger it and it can be hard sometimes to make the relation. There are a number of things I didn't realize were related to SS but now that I know, I can see things coming a little better.
Also, there is a discussion here about the lag time between exertion and pain. It may be worth it for you to scroll through and find it. What a lot of us notice is that there can be a lag time between activity and when the pain actually hits. It may be that when you feel bad over what seems to be normal could be because over days prior you had done more than normal, etc. Worth reading and thinking about.
SK was absolutely right. This is a process. It'd be nice if it was like a cold that can be dealt with with some meds and a little extra rest. It is a complex issue that doesn't go away. Give yourself time, consider adjusting your diet and learn to pay close attention to your body and what it's doing. That'll give you hints as to what your new tolerances are.