Possible Lupus-Med Question

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Tree76
New Member


Date Joined Oct 2010
Total Posts : 3
   Posted 10/22/2010 6:08 AM (GMT -6)   
So I will try to make a long story short here...I started having joint pain in my wrists a while ago (10 years) had been diagnosed with tendonitis. had a recent flare up of tendonitis or so I thought but the pain seemed to have moved into my hands/thumb joints. So my PCP decided he would run some tests and said my ANA was high and that he was referring me to a Rheumatologist.
 
Went to my appt (this was probably the nicest doctor ever by the way) and we sat as he took notes and we talked about all my "other symptoms" for about 45 minutes.
  • a rash that is a perfect red circle on my forearm, i get it every year in the summer on my left arm, the one that is right by the car window and in the sun 90% of the time, this year was bad,it actually scarred as i had several circles next to each other that seemed to not clear up
  • when I breath in deeply sometimes it hurts, the Dr before had diagnosed me with costochondritis, saying it was a virus and would go away
  • depression for about 10 years.
  • random joint pain
  • stiffness in my back and neck when I awake
  • irritable bowel

He mentioned that this could be Lupus and now has me going to a couple of different specialists (dermatologist and GI) and yesterday I gave what felt like 1/2 my blood for tests he wanted, now I have to go to these specialists and get xrays of my neck/chest/hands etc. and he said he would see me in about 10 days to 2 weeks.

Part of me is scared at what I may face, and part of me (I know this sounds crazy) would almost be relieved if all these symptoms would be one thing and not me just falling apart at the age of 38!

The rheumatologist gave me a prescription for Sulindac that is not relieveing the joint pain at all. He was concerned as my PCP had given my Loratab (which was working, I would take 1/2 a pill in the am and 1/2 pill at night-when the joint pain was at its worst). I dont really want to call him and tell him the pain reliever he gave me is not working as it might seem like I am drug seeking. I dont want Loratab or a narcotic I just want to be out of pain. Is it normal for joint pain meds to be a trial and error situation (like anti depressants can)? or should this have worked for me?

any help/advice would be appreciated!

 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/22/2010 8:17 AM (GMT -6)   
Most reputable rheumys that know anything about lupus would be prescribing plaquenil to inhibit disease progression along with an immunosuppressant to inhibit the overactive immune system that is lupus long before they resorted to pain medication.

How long has this been going on? If it's within the first 6 weeks of seeing the rhuemy (ie still in diagnosis limbo), I'd simply call him and say it isn't working -- that can tell them a lot about what kind of problem might be causing the pain. Just say it isn't working as well as the Loratab and what should you do?

Most often those of us who actually worry about being drug-seeking are totally NOT the ones who ever truly would be!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

OuchinOregon
Regular Member


Date Joined Sep 2010
Total Posts : 22
   Posted 10/22/2010 10:57 AM (GMT -6)   
I absolutely know how you feel. For the last 6 months I have been feeling really run down and hurt everywhere. Twice in the last 8 years my ANA test came back positive and my regular doctors did not seem concerned. I finally asked them to run it again back in June and it was really high again. So they finally referred me to a Rhuemy (she is awesome too by the way). She is running a whole series of tests to find out what is wrong with me because something clearly is. While waiting on the tests she has put me on Effixer. Ive only been on it a few days but Ive read good things about it.

Waiting on an official diagnosis is the hardest part I think. I just turned 43 and work full time, I feel like I would much rather just be curled up in bed all day long. Having a support system makes a huge difference too. My boyfriend is amazing and my kids as well. I would be a basket case without them.

I know just how you feel about the pain meds. I have had a total of 15 knee surgeries (with one total replacement), I have had a lot of pain meds and tend to develop an addiction to some. I certainly dont want to do that again.

Keep us posted on how things go.

Stephanie

Tree76
New Member


Date Joined Oct 2010
Total Posts : 3
   Posted 10/23/2010 4:50 AM (GMT -6)   
Thanks for the replies!
Lynnwood-I am in diagnosis limbo as you called it (its been about a week since I have seen the rheumy-1st time) he gave me that medication to help with joint pain, until we really find out what is going on. Thanks for the advice! I will be calling him on Monday to let him know the med isnt working as well as the Lortab. Just didnt want him to think I was trying to get more lortab and that I had become addicted to it, lol

Stephanie-Yeah the pain meds make me a little nervous (lortab)-How are your knees doing now?

All i am trying to do is get my hand/thumbs out of pain, anyone have any good ideas/links for some homeopathic type pain relief for joints?

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/23/2010 8:49 PM (GMT -6)   
Hi tree, ell first welcome to the group. I don't know anyone on Sulindac. I'm surprised he/she has you on something that is not good for your liver since you are already taking lortab which is not good for your liver. There are some bad side effects from Sulindac and I would suggest you discuss it with your rhuemy before you take to much. It's an anti imflamatory that I am guessing is lie presizone without the steroids which is a good thing but sometimes when you don't get the reaction that the doctor is loooking for it says as much as if you had gotten the reaction. kind of how they put the little pac man guys in ya to see if it eats up cancer and if it isn't cancer it doesn't move. LOL sorry it's the best my brain could come up with. turn .  Bottom line is that there is no point if you take yet another pill that doesn't work. and you really need to have an open relationship with your doctor. Start by asking him "how long does it take for this stuff to start working"? Is it like the lortab because that worked right away?.  Than if you don't like his answer you dust off your feet and head for a phonebook full of rhummy's. I've had around 5 so far.
 
well anyway again welcome
blessings
carol

Tree76
New Member


Date Joined Oct 2010
Total Posts : 3
   Posted 10/24/2010 6:47 AM (GMT -6)   
Thanks for the warm welcome Okie!
The rheumy put me on sudinac because he said he didnt want me on Lortab, said that there was too high a chance that addiction could form with it, so I am not taking both, just the suldinac. I will be talking to him monday about it not giving the desired effect.
I feel that i could have an open relationship with him, he seems honestly concerned for me, which is a nice change of pace as most of my former doctors were more the "get em in get em out" kinda folks.
Hopefully they can figure out whats wrong soon as the morning/evening pain sucks and the tired all the time feeling is wearing on me.
 
Thanks again for the warm welcom and replies!
 
Tree 

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 10/29/2010 8:16 PM (GMT -6)   
Sulindac is not a pain reliever (well okay it works for that too sort of). It is prescribed as an anti inflamitory and needs some time to work-it should be taken every day (or twice a day depending on how prescribed) and it may help to limit systemic inflamation.
Still, I am surprised your doc prescribed it-it is really old and concidered not as good as some of the new stuff.
My doc scripts it for me because I have been on it for 14 years and love it and am sensitve to drugs and had bad side effects with other anti inflamatories.
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