MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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toreph 10/24/2017

hello, my name is Renee. i am new here. a couple weeks back my dr ordered test because i have been hurting in my hip and shoulder for about 2 or 3 years. even though i have had some periods of less pain , it always comes back with vengence. i had a steriod shot in my shoulder 2 yrs ago and it helped but only for a while. my pains have gotten worse, my energy level is gone, and i was pretty active. i also now have pain when climbing stairs or getting in and out of sitting position, i can't sleep because my left hip, right shoulder, then if i lay on my back my arms and left leg go numb but hurt at the same time. thats just some of my issues. my labs came back with a postive ana? and a positive RNP 1.5 ? neg ds and neg sm. nurse said could be a connective tissue problem and need to see a rheumotolist. so i go in 2 days to see rheum. I have been reading alot, be that good or bad. because now i have more questions than ever. is 1.5 RNP high enough to start some treatment that could help me with my pain and low energy. could this be why i had systolic CHF that subsided. why i was diagnosed with pulmonary htn years ago. why i have CAD. and all this pains. i can hardly put my shirt on and brush my hair. not only the pain but weaker than usual. for years i have just believed that all these things are my fault for not being thin enough, atheletic enough, eating right, etc. i could go on..as bad as i hate to say it , it might be nice to find a reason why and a treatment . usually when i see my dr. he ask how i am and i say good i just need refills on my seizure med. i am always just wanting to hurry out. but this day i told him, i'm gona tell you the truth today. i am 47 yrs old and i dont know but i don't think i should feel like i do. i told him everything. he smiled and said lets do some blood work. i also told him that my oldest son has RA and is treated for that. so thats another question. could my test results be RA. i have went on to long , i apologize . i guess i want to know if any of ya'll have been diagnosed with test results of a positve ANA and a RNP of 1.5. and what was treatment and does it help. any replies would be appreciated as i am anxiously awaiting. thank you in advance ....most sincerely...Renee

MToennis 10/24/2017

Why yes, Renee! That sounds like my profile! Welcome to our little group. Now, dont get discouraged because when you see the Rheumy (short for rheumatologist, I get tired of typing that long name!) he/she may do more tests and waffle around on giving you a diagnosis, but you fit the bill for having an autoimmune disorder and your labs point to MCTD. There is treatment for this. Steroids help, Plaquenil helps, metotrexate helps, a healty lifestyle helps. You can be better than you are right now. Just keep plugging away and stay in touch.
Mary Ann

toreph 10/25/2017

thank you Mary Ann for responding. as i said i am just anxiously awaiting. I am so hopeful that this rheumy will help me with my pain . i feel the pain and not resting well is the cause of my fatigue and weakness. i actually thought my pcp would say i needed iron infusions again. i find myself craving milk which i dont like so i drink it in ice coffee. but now the weather is to cold for that. i wonder if i am craving milk because of this . did your rheumy start you on meds your first visit. i am having a hard time dealing with my hip and shoulder. just want to get this show on the road and get on with life. i hope you dont mind my asking you questions . i do appreciate so much your taking time to respond. most sincerely, renee

MToennis 10/25/2017

Yes! My rheumy did start me on meds based on the blood work my family Dr did, so make sure that whoever you see gets these results when you go or it may slow the process. But, they always do more labs, every time you go. I think sometimes my fatigue is partially blood loss! LOL! I was put on meloxacam, Plaquenil, and Medrol (a steroid) on my first visit. Gradually, the meds changed over time. At present, I dont take anything but I find my life has become more limited since getting off all meds. At present all my labs are normal except my thyroid is giving up the ghost so I may be on thyroid soon. I hope you get good results from your Dr, but remember that Plaquenil takes 3-6 months to get the levels in your body where they need to be. I was on that and steroids for around 10 years with intervals of meloxicam and celebrex (which I love but hates my stomach!). Let us know how it goes!
Mary Ann

Katalyzt 10/25/2017

Welcome, Toreph! MT is our usual welcome wagon here, and then I often chime in and say, "Yes, I agree with everything MT said, not much to add except..."

So I will do my usual thing: Yes, I agree with everything MT said! Here are some things about anti-RNP testing that are hard to understand and most rheumatologists won't explain simply because patients don't usually ask:

* Your anti-RNP (technically, it's anti-U1-RNP, I think) is either positive or negative. How far outside the reference range you are does not correspond to severity of illness. For example, I have a crazy high titre anti-RNP, but my symptoms are relatively mild. (No one knows why. It might be because I'm male, it might be because I was able to be get by with very little medication, it might just be dumb luck.)

* Conventional wisdom is that once anti-RNP is positive, it never becomes negative again. MT is an exception to this, but I have always wondered if this is simply because they tested her again when she was in her 50s, which is kind of unusual... maybe this happens to a lot of MCTD patients, but no one ever looks for it. I know that my test result was positive three times, and after the third positive result, my doctor said, "We're not going to bother testing it again, it will probably always be positive."

Other things: The numbness and sleep issues you describe are very familiar to me. Sometimes, my ear will be in wild, crazy pain just from sleeping on it! But, if you are like most of us, the pain subsides once you get moving.

The most serious symptom you describe is the pulmonary hypertension. Has anyone ever said why they think you have this? If it is due to MCTD, my .02 cents is this should be treated fairly aggressively. Generally, I am not a fan of the class of drugs known as DMARDs (disease modifying anti-rheumatic drugs) because they are relatively toxic. However, if your doctor recommends plaquenil or methotrexate or both, and I had your symptoms, I would not resist too much.

Katalyzt 10/25/2017

Sorry, hit "send" too soon. We do have several members who have had pulmonary hypertension for a long time and been relatively stable. Also, it is very common to blame yourself, but there is nothing you did to cause this, so you can start letting go of that right now!

We generally seem to find that staying active helps. Find out how much exercise it's okay for you to do, and try to do that, even if you don't feel like it.

The other side of that is: Rest when you feel like you need to. Of course, no one wants to take a nap every day for an hour or more-- a 20-minute meditation is ideal, a 45 minute nap is better-- but if you need to take a longer nap, just go for it... and then when you wake up, slowly stretch and get moving again, even if you don't want to get out of bed, so long as your doctor can assure you that it's safe to do so. So it's a combination of pushing yourself and also giving yourself permission to just lie around and do nothing sometimes.

Hang in there, and post back and let us know how you are doing! It really helps us when folks follow up and tell us what works and what didn't. -- Katalyzt

Cherry 10/26/2017

My husband was just diagnosed with MCTD Sept 2017. He has mild Raynauds and on and off swelling of parotid glands. Last x ray showed scarring on his lungs even he never smoked in his life.. So rheumy ordered CT scan of lungs and chest doppler US for the heart. Anybody here had scarring of the lungs?

toreph 10/26/2017

thank ya'll for responding. i see the rheumy today at 3. i will definitely write back with info and questions i'm sure. about the pulm htn. i was dx in 2001 by echo, followed by right heart cath as borderline with no treatment or follow up. 2008 or 2009 cardiologist rediagnosed it and put me on meds that dropped my bp to low. he wanted to do more test and a pre approval to start me on viagra for pph. when i left his office i cried and i think i must have been in denial , but i did not go back. i did also have a dx for wolf parkinson white syndrome and a specailist attempted to do ablation in my heart , but when he was in there he could not find where it was misfiring . i was so frustrated and so tired of all the dx's and never any treatment. one dr would say i had something and another would say i didn't. i started thinking is it me, or maybe none of them know what they are doing. i think i just went in denial and stopped trying to figure it out and figured this is just my lot in life. i do feel a little hope that maybe this will explain so many things and hopefully i can get some sort of treatment that will maybe allow me to stay somewhere in the middle at least , without all these low spells that seem to come out of the blue. i do so appreciate ya'lls kindnesses sharing your experiences . i hope i am not ramblin to much, i'm just trying to make some sense of it all. thanks again . most sincerely, renee

toreph 10/27/2017

update,,,i went to rheumy yesterday. she is running more labs and xrays. said she is thinking uctd at this time. started me on prednisone 10mg and said that can also be used to help dx .if it helps that is a strong indicator of connective tissue dz. she told me to see an eye dr if possible before my follow up with her in 2 wks because she can't start me on plaquenil til i get cleared to take it, so i see the eye dr nov 2 and back to her nov 10. she also said that the pulm htn could be connected. she seemed taken aback when she read i had been dx w pulm htn . so here i am at 2 am again unable to sleep because of my shoulder pain but honestly couldnt wait to take that prednisone to see if it helps. she said its fast acting and i am prayin it is. when she ask about my pain , my precious husband (bless his heart) chimes in and says " she hurts all over" and all i could say is I'm sorry , its true. alot of the test she is doing are the same but she added a couple like c3 and c4. i am not familiar with those. waiting and wondering about results is not my favorite thing to do, but if this prednisone helps maybe it won't be as difficult to be a more patient-patient. first time i've ever thought of the word patient as ironic. crossing my fingers for a good day for myself and all of yall too. thanks again for your support and understanding. most sincerely, renee

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