Next Steps

I was diagnosed just over 2 months ago with Lupus and RA and have been on Plaquenil for this time.  I am in the midst of another bad flare and see my rheumy next week.  Based on your experiences what do you think he will do next since it is not under control?  I am really hoping to avoid prednisone since I took so much of it years ago.  How long did it take for you to get yours under control?  Or am I dreaming?

[karajo]

So sorry to hear about your dx.  But I know that by the time I was dx, I was just ready to find out and maybe get some help.  Knowing what was going on was better by that point.  

I know when I began to take Plaquinel, I didn't feel better for quite a while.  I know @ 2 months I felt somewhat better, but by 3 months I could really tell things were going in the right direction.  Each month I felt stronger and was able to do more.  I had went from being bed ridden and my muscles had deteriorated during the year and a half test and trying to dx what was going on.  Also, I needed a prednisone shot last winter when I got walking pneumonia which threw me into a 2-week flare.  WOW, that shot gave me quite a boost.  I realize prednisone is not the route we want to take, but I was needing something.  I also have headaches, but they are not as frequent.  Most of the time 2 Tylenol and 2 Ibuprophen help with the pain.  Actually, I hurt everyday, but I don't take the tylenol/ibuprophen eveyday I hurt.  I save that for th big bad days.

Understand that I still have flares.  If I spend too much time in the sun or get out and over-do.  A week ago, I got out and played kick ball with a bunch of kds.  Sun and over exhursion.  I was in bed for 2 days and couldn't function for another 2 days.  There isn't anything out there that will completely take all of this horror away except God!

Praying for you

[luppygirl]

Sometimes plaquinal can take up to 6 months before you feel better. I think I was at about the 5 month point when i finally started to pick up a bit.  I was also not on prednisone during most of that time. They only put me on prednisone for my severe hives once those got under control I went off prednisone. All my doctors wanted me off that stuff face because i had such bad side effects. In my opinion prednisone definitely has a place for helping lupus it did help save my life but long term effects are so damaging to the body. In the few months I was on it they did a bone density scan and I already had 25% bone loss in my right hip. That was only after 3 months on it. It has also been proven that the longer you are on prednisone the harder time you have getting off of it.  I guess all I am really trying to say is if you can manage to stay off of prednisone stay off of it. There must be other options. My dr ended up putting me on imuran after not taking prednisone and having to stop taking antianflammatories due to a stomach ulcer. I find it did help and it has risks like any medications but for me i can live like a normal person on imuran and I couldn't live a normal life on prednisone ( i shouldn't have been allowed out of the house when i was on prednisone). Just make sure you ask your doctor all your options before jumping and taking prednisone and get yourself well informed when it comes time to make a decision.  At least if you do have to take prednisone you did research and know that this is the right thing for you.