View Full Version : Time to get this under control

01-30-2011, 10:36 AM
I believe the last of the plaquenal is out of my body and any thoughts that I might not have Lupus are gone. In the past few days I've had more malar rashes than in all the months before. Last night I literally had welts on my face and for the first time, I can say it was not just uncomfortable, it was painful! And then there's my elbows. I thought I must have banged one without noticing but the pain never got better. Well this morning I woke up with the other elbow in just as much pain and I know I didn't injure it, too! Suddenly I realized, my God, it's the Lupus! I'm used to the burning pain in my legs and hips from the fibro but this joint pain is a completely different animal. My shoulders just ache, which I had blamed on my pillows since I have to sleep sitting up since I can't breath due to my lung problems, but that's most likely just more joint pain.

Anyway... I have got to find a doctor that is going to take this seriously. My rheum dr. took me off the plaquenal after my ANA score went to zero. I'm reducing the Prednisone because every dr. has told me to do so and I wouldn't mind not looking like an inflated balloon for a change. But when all this started, my pcp gave me quite the talking to about taking my Lupus medicine and all the horrible things that can go wrong without it and now that the symptoms are multiplying by the day, I think it's time to get on board!

I have a list of local doctors from the Lupus Foundation and I guess I will start calling around. I may also call my pcp since he seems to be the only one who agrees with the Lupus diagnosis. In addition, as this is proving itself to be Lupus more and more each day, that means that I do indeed have shrinking lung disease and need to get on something before my next alternative is a heart/lung transplant (yes, it gets to that point!).

What a mess! But, right now I'm feeling pretty well in spite of aches, pains and rashes so this is the perfect time to start sorting this out. I'm not thrilled with getting back on the plaquenal or the methotrexate but the alternative isn't attractive either.

Wish me luck!

01-30-2011, 11:03 AM
I think getting a recommendation from your PC is a good idea. Maybe even get a letter from your PC to take to the new rheumy, it can't hurt only help. Yes, you do need to get some control and I know you can do it.

Good luck and you must remember that we are here for you

01-30-2011, 12:09 PM
hi serand4,

wow, so sorry to hear about all that you are going through. i once tried to reduce my mtx, but immediately went into one of my worst flares. once i went back to the original dosage, the flares were back in control.

i agree with you, between your symptoms and your reaction to coming off plaquenil, your criteria for a lupus diagnosis are very strong. If your ana count was zero, then that probably means that the plaquenil had your lupus under control, and there was no inflamation.....i would think that any qualified rheumy would understand that. my rheumy celebrates if there is a reduction in my counts....she never mentions coming off meds.

i also agree with nonna, sounds like your pcp is a good partner for you to use in your search for a good rheumy.....they are out there, but sometimes we have to really look for them....my first rheumy was supposedly the best at one of our huge hospitals....well, after the mayo clinic diagnosed me with fibromyalgia (my first diagnosis), the rheumy told me that he "did not recognize fibromyalgia." I got my medical records and never went back. I searched for another rheumy, and found a perfect match for me.....so, don't give up, and don't feel bad if you see the need to change rheumies....you know your body, and you need a dr. who will approach your treatment according to your needs.

my elbows were one of the first areas that were attacked by the little lupus demons. I still have problems with my shoulders, they hurt so badly. these little antibodies will pick a certain part of our body, and just gnaw away. I truly believe that the plaquenil and mtx combination helps keep the attacks at a minimal.

good luck,,,hope you start feeling better soon

01-30-2011, 04:10 PM
Stand strong girl! Make em listen!

01-30-2011, 06:15 PM
Thanks guys! I will be making phone calls tomorrow to both my primary doc and my rheum doc. I went to the mall with my son and within an hour I had the malar rash flare up and the fatigue just settled in like a wet blanket. Tonight I'm barking up my lungs which means there's a good chance that I'll be back into bronchitus by tomorrow. Any activity completely messes me up. I had picked up my son this morning at my parents and I was feeling great. My father, who has been with me at every ER visit and watched me deal with the constant sickness, looked at me so earnestly and said, "don't push it too far." He's usually a "suck it up" kind of guy but this time I could tell he was very genunine in his concern. Man, I just hate how this disease steals away even the few hours you think you have to enjoy. While we stood in the check out line, I was beet red, sweating profusely and leaning on the check out stand. It was as if the gas tank suddenly emptied and I was stranded. It's time to get on medication and get this stopped!

Thanks again or your support!

01-31-2011, 11:43 AM
Hi Serand,
I hope that you are looking for a good rheumy today. I still think that you should look for one who is associated with a teaching hospital there in St. Louis, like SLU or Wash U.
Honestly, do some of those docs think that we are actually cured just because the blood work changes? Isn't the whole reason that they put us on meds to make our blood work better?
I swear my new rheumy doesn't want to accept my old blood work, and acts like she really doesn't believe that I should still be on the Plaquenil and MTX. She muttered something about keeping me on it "if I insist". Liike you, I've noticed that if I'm off of my meds for whatever reason, the first thing that I notice are the skin symptoms coming back.
Really, I think that we patients deserve more respect from those docs!
Hugs to you,