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Im age 34, female. i got diagnosed with UCTD, fibrmyalgia and Autoimmune Disorder just last month.

Posted , 6 users are following.

sarah66461
sarah66461

I am having a hard time understanding what is wrong with me!  The rheumatoid doctor put me on Plaquenil and also a low dose of prednisone. Both twice a day. The plaquenil. ..During the first week made me so depressed and fatigued. Also belly aches and some heavy headaches. I couldn't bare those side affects anymore so I stopped the plaquenil all together after that first week. other than dealing with my sore and swollen joints, not being able to groom anymore and my skin becoming more and more sensitive and itchy, I feel much better without that medication.  but I'm still so lost and confused about my diagnoses. does anyone know anything about UCTD? HELP! thanks...

1 like, 8 replies

8 Replies

  • hope4cure
    hope4cure sarah66461

    Posted

    Sarah,

    I am so sorry that the meds have made u feel sick, unfortunately most RA meds a affect me the same way. And make me feel worse. I had the same reactions. These meds made me feel so much worse and the sickest ever that I came to the conclusion that it was not worth the risk for me. Sometimes the side effects r intolerable.

    I now take OTC Meds I do much better without all the side effects.

    This disease is autoimmune and there are very little treatments without side effects.

    Have u tried any biologicals ..Stelara ..Humira..? Some drugs can give a better quality of life if they don't make u sicker trying them.

    Its a real catch 22. The decision is urs to try RA DRUGS. Be sure u read about all of the drugs available to understand and know what u r taking.

    Hope u fell better soon. And no more pain and suffering..especially the worrying!

    CHEERS

    HOPE

  • CA-Lynn
    CA-Lynn sarah66461

    Posted

    For those who do not know, UCTD refers to undifferentiated connective tissue disorder. And while it sounds vague, all it means is that there is real evidence, but not quite enough evidence, of connective tissue disease.

    http://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

    Most of the DMARDS [Methotrexate, Plaquenil, etc.] take a little time to start working. I wonder if switching you to Methotrexate might be an improvement in terms of side effects? 

    You SHOULD NOT STOP DMARDS. The reality is that if you stop them, you will have further joint destruction that is irreversible. The DMARDS prevent this from happening. So your choice is [1] "feel better without that medication" and later suffer the serious consequences, which will include restricted mobility and more inflammation and pain, uncontrolled, or [2] find a DMARD that has the least side effects [and some people have no side effects].

    Just my personal opinion: I think Fibromyalgia is WAAAAAAAAAY over-diagnosed whenever they can't figure out what the real source is.

    While it appears they haven't decided just yet what your connective tissue problem is, in time they'll be able to tell.

    • sarah66461
      sarah66461 CA-Lynn

      Posted

      Thank you for your response! I am due back to see the rheumatoid doctor this wednesday. I was not aware of stopping the medication bringing on severe problems later due to stopping. but just after one week still? I have always had the same thoughts about fibromyalgia. everyone has fibromyalgia!  As well as ADD! or ADHD! I appreciate your thoughts and thank you for the link! I hope I can get a better understanding and get this under control so I can go about my life! I am a single mother with a 5 year old son. sometimes it's really hard to deal with life's stresses especially when you have no family support or support at all for the matter. But I am hopeful and an optimist! I think I know the true answer in my heart but so hard to face. But if eating just the right foods meaning (the rawest of raw vegetables and fruit, nuts and lots of  water that i can find and make a consious effort of only eating the food that nature provided us to live  on..if that can be my medicine and help with all my symptoms (the list goes on) I need to do it! 
    • hope4cure
      hope4cure CA-Lynn

      Posted

      Appreciate all UR efforts. Many find there way thru this is a bumpy ride.

      nice to have members like u post who care & share experience & knowledge.

      knowledge is the key.

      CHEERS

      HOPEconfused

    • CA-Lynn
      CA-Lynn sarah66461

      Posted

      Yes....just like ADD was over-diagnosed, Fibromyalgia seems to be going down the same path.

      Stopping the meds doesn't "invite" the pain and inflammation in. Instead, you lose the "protection against further joind damage." Think of it that way. One week off didn't do any damage, but you really want to understand the ramifications of not taking DMARDS.

      Trust me, diet is not going to help this disease. However, everyone benefits from a healthy diet and reducing surplus weight. But it won't do a thing to help RA [or in your case, UCTD].

      Life stressors don't help. One thing I've learned since my diagnosis about 20+ years ago:  to  stop sweating the small stuff.

    • marilyn46889
      marilyn46889 sarah66461

      Posted

      Sarah I'm so sorry.  But I think you should take methotrexate.  I've now got all the joint damage because nothing was done early. The pain from that is terrible.  
  • nicola25275
    nicola25275 sarah66461

    Posted

    Hi Sarah, I'm Nikky - 37 and have recently been diagnosed with RA. I too am finding the medication tough going, but I'm scared without it there will be harder repercussions in the future. I have a 6yr, and along with a full time job it is daunting facing the thought of dealing with this long term. I'm new to the forum but the kind replies and advice is helping me put pespective on the here and now. I'm trying to adapt my diet, exercise and as I am no expert don't know if it helps but it does help me mentally - to know I'm trying my best to adapt and do what I can for myself. Something as simple as hair, skin and nail suppliments has made a real difference to me - as all of the above lately have gone to pot! (Not sure whether this is related on) Hope you find some more answers soon x
    • hope4cure
      hope4cure nicola25275

      Posted

      Nikki,

      u have a lot on UR plate & way to young. 

      UR attitude is inspiring for all of us ..

      THANKX for sharing.

      CHEERS

      HOPEconfused

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