New issue - possible Lupus

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Taysgrama

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Sorry I haven't posted in a while, but I have been having some health issues that are really getting to me....I had knee surgery for the 6th time on Feb. 11th and for about 4 weeks I felt really good. No pain, no knee giving out, etc.....well, I am now back to major pain in my knee as well as most of my other joints. Those never went away, but since my PCP said she thought it was Fibro, I figured I would have to just live with it. I have been to see my ortho doctor and he sent me for a second opinion with another ortho in his office. I saw him yesterday and after asking me a ton of questions as well as doing a thorough exam he said that my joints (ankle, toes, knees, hips, wrist, fingers, elbows, shoulders, etc) are not "right" and he thinks I may have Lupus, given all my symptoms. He is sending me to a rheumotologist and he also wants me to see a spine doctor in their office because of all my back and neck issues.

Again, I am scared since Lupus is treatable but its not curable. I have some good days, but lately it seems there are more bad days....extreme pain and having a hard time getting out of bed or out of my chair. Since I have an ulcer, I can't take NSAIDS. Tried to take them before and paid for it dearly...not gonna try again either. Then because I am on Coumadin, there are a number of medications I can't take there either (at least according to my ortho doctor) so I am currently taking 500-1000mg of vicodin every 4-5 hours and Soma 3 times a day and that is just making it tolerable.

Thanks for letting me vent and for being there for us all when we need help or information...And, to top all this off, my INR has been all over the place for the last month. Down to 1.3, way up to 4.3 and then back down to 2.0 and finally at 2.8 last Monday! Can't figure this stuff out this month for some stupid reason! Thanks again all......Diana
 

escargome

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Oh geez Diana. What a kick in the pants. I will pray that the Lupus diagnosis is incorrect. Please keep us updated. I shall keep you in my thoughts and prayers.
 

Ross

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Sounds to me like you need to see a Pain Management Doctor as well and get some REAL painkillers.

What drugs is this guy saying you cannot take?

While Soma isn't showing as something that interacts with Coumadin, it does with asprin, so I have to think it may be partially responsible for your fluctuating INR.
 

Lynlw

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Sounds to me like you need to see a Pain Management Doctor as well and get some REAL painkillers.

What drugs is this guy saying you cannot take?

While Soma isn't showing as something that interacts with Coumadin, it does with asprin, so I have to think it may be partially responsible for your fluctuating INR.
I agree with Ross, it sounds like you need to go to a pain doc, (and it might take a couple before you can find a good one) I have terrible back pain and the pain doc was he only one that were able to give me relief. I don't take coum, but have GI issues/reflux and beside pain meds you swollow there are other options for controlling pain, from morphine pumps, to implanted spinal stimulators that help with pain (I had one of thos but it broke) that kind of look like a pace maker and tricks your brain into not feeling pain. I take a few pain meds every day and every so many months they need changed around (I've been going to the pain doc for 9 years)
One thing about vicadin, especially since you have a couple things going on. Because of my different meds I have to have liver blood work every so often. I have vvicaden for break thru pain, and that is the drug my pain doc always tells me not to take too many of because of the damage they can do to your liver. I think it is fine for short term, but since i take it long term, I am supposed to be careful with it.
 

catwoman

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Diana:

Have you had a test for lupus (ANA test) or rheumatoid arthritis?
My sister has both. Lupus was DXed after she shattered a hip in a freakish fall in her home (dog she was trying to restrain threw her off balance) at age 42. Things just didn't heal right after her hip replacement, and she insisted on an ANA test. Several years ago she was DXed with RA. Our dad had RA as a teenager or young adult, has had no problems for years.
It's now almost 12 years since her DX with lupus. BTW, she also has fibromyalgia.
My PCP has tested me for both RA and lupus; I was negative. There are genetic factors to both lupus and RA, but I haven't delved into any research since I have no children.
 

Taysgrama

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Location
Franklin, Ohio
Marsha - I am waiting for the test results, but you are right. You can have both Fibro and Lupus. My cousin on my mom's side has RA, my uncle on my mom's side has RA and Lupus, so I guess it is genetic.

Ross - I have been on the Soma for a year already, so wouldn't it have messed with my INR before now? I am currently taking 5mg on Mondays and 2.5 mg the rest of the week (coumadin).

Once I have a diagnoses, I will ask for a referral to a pain management clinic/doctor. I am really tired of being sick and tired all the time! And tired of being in pain more often than not. Taking pills all day long sucks, but its better than the alternative of being dead, right?

Lyn and Chris - thanks for the vote of confidence. I am so glad you are all here for us when we need it. You are all a blessing to us in the VR Community.
 

Bina

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Just to clarify: The ANA test does NOT confirm or rule out Lupus by itself, it only determins Anti Nuclear Antibodies which are present with MANY auto-immune diseases. My ANA test is positive, we even did it twice a few yrs apart. My RA (rheumatoid arthritis) test is negative. It can take a good many additional tests and detective work to nail down which auto-immune disease is active. I also have a very long history of joint/muscle/tendon issues and pain. Of course now that I am inactive and not stressing, my pain is almost non-existant the majority of the time.
Diana, don't give up with the pursuit of treatments and relief. :)
 

catwoman

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My sister had negatives on the ANA test several times before her hip joint replacement. When it didn't heal correctly, she insisted on another test and asked that doctors look at all symptoms. That test was finally positive.
 

Cris N

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Diana, so sorry to read of this news. It sucks. Would be really nice if it turned out to be something else that easier to cope with. I agree with the others, you do need to be aggressive in finding proper pain relief. With all the things out there, there's a combination that will work for you... be persistant.
 

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