Overlap, MCTD, UCTD?????? So frustrated!!!!!!

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jeanneac
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Date Joined Feb 2009
Total Posts : 1916
   Posted 7/18/2011 9:27 AM (GMT -6)   
I honestly don't know where to post and haven't for some time. However, I went to my old rheumy today and he still stands by either mixed connective tissue dz. or UCTD. He ran some more blood tests. They've always come up negative in the past except for an ANA and sed rate, those are positive.
 
 He said going to a stronger medicine would be a very big decision to make. He was thinking about methotrexate but is waiting on the blood tests. So far I just have a positive ANA and high sed rate (52).
 
I feel for an absolute fact that I am sun sensitive. I get out in the sun and then get horrible aches and pains in my joints. I feel bad all the time and I just want to feel better. The plaquenil isn't cutting it. The name brand certainly helps some but it isn't helping anywhere near where I want to feel. This is just so frustrating. Has anyone else where had these problems?? It makes me feel like a hypochondriac and if my tests don't turn up more positive, I think the docs are going to say the same about me!
 
I have a very dry mouth with dry nose but not dry eyes too.
 
I woke up today with a horrible headache. cry
 
Tramadol makes me feel better but I am afraid to take it every day or I might get hooked. I just take one 50 mg. Any suggestions on that one?
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, cozar for high BP gave me bad joint pain,
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed ra

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1470
   Posted 7/18/2011 10:10 AM (GMT -6)   
Oh, I am so sorry you are having such a rough time. I was a little suprised to read the MTX would probably be the next step of action. have you looked into Imuran? It would take several weeks/months for you to notice any change but deffinaltly would not be as rough as the mtx might be on your body.

I am not sure about the tramadol, It never helped me so I didnt take it. What does the doc say you can take? If you can take it 3 times a day and it helps, I would deffinatly take it 3 times a day or as needed. no reason you should go through pain when you have some medicaitons that will help alievate it!!!
Amy
Lupus Moderater
Myfortic, Prednisone, carvedilol, Eliphos, furosemide, sodium bicarbonate, Celexa
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 7/18/2011 10:59 AM (GMT -6)   
Most drs treat with the main 3 - Imuran, Cellcept, or MTX. It's not known which might help a certain patient or why. Some Drs prefer to start with Imuran, some start with one of the other meds.

However, before that Drs usually use some sort of prednisone or other anti-inflammatory to address what is causing the pain. I am leery of those who go straight to pain meds.

Most patients have a 3-pronged approach -- Plaquenel (disease-inhibiting), Prednsione (anti-inflammatory), and Cellcept/Imuran/MTX (inhibits auto-immune response). And then if there is still pain, some pain med, as little as possible.

For me, the Imuran did nothing, but Cellcept worked wonders, and I never tried MTX.

You might want to get a second opinion.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 7/18/2011 1:10 PM (GMT -6)   
My doc said he felt like mtx was the least offensive drug to start with-:) It doesn't sound like patients have the same opinion from what some have said here. I am just so frustrated and tired of feeling bad. I had colitis for the past several years culminating in a resection last Nov. I thought I'd have a new life after that and now this. I had some joint pain when I had colitis and assumed it was b/c I had colitis and was sick. After years of feeling bad without relief, I am sick and tired of the pain and a little sick of some doctors too. Sorry, I am having a bad day. I went out in the sun yesterday having convinced myself that sun sensitivity was "just in my head" and I am paying for it today along with horrible headache. Thanks for your responses and for listening. I'll post back when I get my lab results. I am not expecting much b/c they have all been negative in the past except the ana and sed rate.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, cozar for high BP gave me bad joint pain,
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed ra

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 7/18/2011 1:59 PM (GMT -6)   
I just wanted to say we share a very similar story.  With me it was the positive ANA and CRP, rather than sed rate.  Recently had a very mildly positive anti CCP (RA test).  I've been on Plaquenil for close to 3 yrs.  It worked great for awhile, making me feel much better, and then I was back to almost where I was before I started.  I'm better again now - have given in and just take Advil every day along with it - which I don't like to do, but it helps so much - I just try to take as little as possible.  At my last appt.,  rheumy gave me a script for Prednisone for flare ups of pain - which I haven't done yet.  I also have osteoporosis and OA of my SI joints. 
 
I also learned the hard way that I can't tolerate the sun and it will cause flares - which is what it sounds like you are going through.   I kept trying to believe it was because I had worked too hard in the yard, walked too far, etc.  that made me feel so totally awful afterward, but it just got worse and worse and finally I made the connection and try to steer clear until after 5PM or later, and even then I'll wear a hat (along with Sunscreen every single day, rain or shine).  Even flourescent lights in big box stores can set me off.
 
My rheumy is sending me to a spine center because of the OA in the SI joints (and elsewhere), and I'm to see a metabolic bone doc in Sept.   I am very tired of doctoring as well.  My dx has been fibro, then UCTD, then rheumy thought RA, now not so sure....we're still trying to put it all together. 
 
I had to get on the name brand Plaquenil also - I know it is helping, even though I don't feel great and still have pain - I believe it keeps me out of all out flare/flu-like symptoms most of the time.  I also have the dry mouth problems and sometimes dry eyes.  I've been given Tramadol to take, but like you - it sits in my cupboard mostly for fear I will rely on it too heavily.
 
I found out I have Celiac  and have been on a gluten free diet for nearly 2 years.  Didn't seem to make all that much difference for awhile, but I believe now that it has made a very positive difference.  Didn't solve all my problems, clearly  - but there have been some distinct improvements. 
 
Anyway - just wanted you to know I understand the frustration and feeling so stuck.  I hope your results will lend at least a clue, if not a diagnosis - and that you will feel better sooner.
 
Lucy

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 7/18/2011 6:10 PM (GMT -6)   
Gosh Lucy, it does sound like we have a little bit in common. I have wondered if at some time I will come up with RA b/c I am just one point under the cut off for having a positive RF, if that means anything-:) I am finding out that while there are tests, they don't always mean anything.
I am anxious to hear what the doc thinks about my test results and if he wants to put me on mtx. I just want to feel better. When friends and family ask me how I am doing, most of the time, I just lie and say fine. I know the people on the forum understand-:) Thanks for your support!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, cozar for high BP gave me bad joint pain,
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed ra

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 7/24/2011 5:46 PM (GMT -6)   
Turns out my sed rate was down and according to the nurse, other tests were negative. I went back on name brand plaquenil and feel soooooo much better...... Also taking vitamins and meds for asthma, which seem to be giving me some energy back.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, cozar for high BP gave me bad joint pain,
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed ra

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 7/24/2011 9:36 PM (GMT -6)   
Glad to hear you're feeling bettter!!!
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