Undifferentiated

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undiff
New Member


Date Joined Mar 2015
Total Posts : 5
   Posted 3/11/2015 6:14 PM (GMT -6)   
Just call me Undiffdude. I have Undifferentiated connective tissue disease (UCTD). Which to me is like you are part lupus but not quite cool enough. Whatever.

I have very low c4 and c2. c3 is normal. RF is consistently mildly high and ANA is consistently mildly positive. Weeeee

I feel like utter crap most days, I hate whining. Joints and muscles are constantly sore -among other wonderful symptoms like fatigue, headaches, enigma skin conditions, swollen body parts, and a horrible gut. I am a 39 year old male and pretty athletic but losing to this undiff crap.

Just wanted to vent. Like I said I'm typically not a complainer and just push through whatever this crud I have been dealt.

I'm on Plaquenil which so far has been pretty uneventful. Just give me a strong shot of steriods throughout my body and leave me alone for god sakes hahaha

-undiffdude

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/11/2015 7:43 PM (GMT -6)   
Undiffdude,

Sounds a lot like me. How long have you had it? What exactly is your ANA test results?

My worst symptoms are stiff legs with very low endurance. It sometimes feels like my legs are going to give out when walking. The sore hands which are very clumsy are also awful.

How long have you been on plaquenil and what dose? I should be getting on it tomorrow.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/11/2015 8:37 PM (GMT -6)   
Welcome, dude.
This stuff stinks to high heaven. The swollen fingers sound very familiar. Have they been xrayed? That's how RA is diagnosed too.

You should be feeling the plaquinel soon.

We all wish steroids came as a candy we could have when we need them with no problems attached.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

awtnm
New Member


Date Joined Mar 2015
Total Posts : 2
   Posted 3/12/2015 12:23 AM (GMT -6)   
Hmmmm I have the puffy hands with no strength, too. Dx with Lupus, but.... Legs weak, shaky at times. Foot pain is amazing! Like Kathy Bates with a sledgehammer smacking the bottom of your feet. How did this UCTD Dx come about? Ahh the love/hate relationship we all have with steroids. I joke that they are my American Express, because I don't leave home without them. My ANA is sky high 1280!

undiff
New Member


Date Joined Mar 2015
Total Posts : 5
   Posted 3/12/2015 10:10 AM (GMT -6)   
@rocky hang in there. I read your post. It started for me in my mid-20s and I just blew it off, shook it off tried to pretend nothing was wrong. Occasionally I would get these ridiculous skin flares that sent me all over the place and was even diagnosed Behcet's for a while before I ended up UCTD. My ANA is always positive but usually only 1:80 but have had 1:160. Keep on it. Try plaquenil, after a few days you won't feel like you want to vomit from it :)

@tater the tests....I have been tested pricked and poked so much it's crazy. I'm sure most people on here can relate to that. I haven't had too many xrays. Been on lovely plaquenil for 2 months so waiting for that month 3 spiritual experience I keep hearing about - i guess

@awtnm God bless you. I catch myself b1chin and realize there are people out there that are seriously sick from this Kathy Bates crap. I've had my fair share. I recent got out of the hospital for emergency gallbladder removal with vasculitis. Related? who knows depends which doctor you ask. UTCD because of many never-ending blood tests show indication of CTD - not quite lupus but 'lupus-like'.

feeling decent today. got to take advantage of these days. for the most part exercise helps me a lot if I can. Ease in slowly to get body moving.

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/12/2015 10:48 AM (GMT -6)   
Ditto on exercise. Not sure why, but when I go several days without lifting and running, I feel much worse. This sickness will have me in the best shape of my life.

My ANA was only taken once and was speckled at 1:80- we sound very similar. I just turned 26. Felt like crap for 6 or 7 months now. How did yours start? I was just standing in the shower one day and my legs started feeling weak. Over the course of a weekend, I got progressively worse. Thinking back, I had started to get sore hands at work for probably a year before all of this. Never thought much of it.

Do you get any really specific pain points? Sometimes my pinky finger and pinky toe hurt so bad, as if I've broken a bone.
 
Being young and healthy, it was near impossible to convince doctors there was actually something wrong. Did you get hit with the "it's all in your head" junk? I hadn't seen a doctor in nine years prior to this. Why would I decide to be a basket case all of the sudden?

Post Edited (rockthecasbah121) : 3/12/2015 10:51:18 AM (GMT-6)


undiff
New Member


Date Joined Mar 2015
Total Posts : 5
   Posted 3/12/2015 11:15 AM (GMT -6)   
Yea, I even made it through a Spartan Beast - Trifecta last year. and several half marathons. and I love Crossfit, esp. when I feel 100%.

It started for me exactly at 26 years old, i mentioned I'm 39 now. Mine was more skin flares to begin with. The entire roof of my mouth inflamed for no reason a few times a year - holy hell it hurt. I went from one dermatologist all the way up to the best guy to figure out what it was. ended with 'auto-immune' maybe Behcet's. I also have crazy bad headaches to the point of I wishing death about 10 times a month. I see a neurologist and we really haven't been able to determine exactly why. Once after a race my throat closed up for no apparent reason and I could swallow without pain for several days -epipen and prednisone it went away. My new thing - I have an enlarged heart that has abnormal sound all the sudden, so getting that checked. I just roll with it now


My knees and shoulders absolutely suck, nearly always some pain in toes and occasionally fingers. nerves, joins, muscles, circulation is just off. I have had multiple pinched nerves thoughout my body that have been surgically fixed and I have one in my brain.

With this stuff who knows what's related, what's not. I've literally gone back in forward on so many things that it's pretty fitting that i just end up Undifferentiated afterall - which apparently is a real thing.

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/12/2015 12:45 PM (GMT -6)   
I haven't had too many skin problems, although I have had several cysts in the last half of a year but I don't recall ever having one before this.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/12/2015 5:15 PM (GMT -6)   
The festers in the nose and mouth is aggrevating to me. They are hard to heal up.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/13/2015 6:01 PM (GMT -6)   
I'm a fellow uctd'er. Sometimes I'm lupy but my rheumy changes her mind alot lol.

Plaquenil has helped me alot with fatigue and I have to concur about exercise. The more I force myself to be active the better I feel. It's like old gears that rust when they are idle. I'm 39 as well. Some days I feel 89 but I keep plugging along.

I get a ton of weird rashes and skin stuff going on. Have been my whole life.

This week I'm undifferentiated with a side order of possible immune deficiency. Who knows what my next rheumy appointment will bring?! It's like opening a cereal box every visit and seeing what the prize will be this time!

Never a dull moment. Solidarity my fellow uctd'ers! We should have a special handshake. :)
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 3/18/2015 4:25 PM (GMT -6)   
There is a lot of confusion about uctd which is simply a diagnosis of an autoimmune syndrome that is not definite. Over time it will often morph into a clear diagnosis of one disease or another but more often something like MCTD which usually includes symptoms of polymyositis or dermatomyositis, sle lupus, and scleroderma. It can also include symptoms of other AI diseases like RA.

I have mctd which presented with lupus symptoms and then polymyositis and can accurately say I have both diseases. Scleroderma has never been an issue fortunately and I know many others with mctd whose presentation, progression and symptoms are quite different.

Just means your immune system is seriously misdirected and likes more than one target in your body. In order to have a diagnosis of mctd the anti rnp antibody has to eventually show up but is often negative in tests in earlier stages.

Keep in mind that lupus, ra, myositis, scleroderma are all connective tissue diseases and having a combination of symptoms just means you have an overlap condition or syndrome.

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

dashlink675
Regular Member


Date Joined Nov 2013
Total Posts : 21
   Posted 3/19/2015 8:19 AM (GMT -6)   
I have UCTD too- or at least that's what my forms officially say. I love what you say about every rheumy appointment being like opening a cereal box acquiesce! That is exactly how I feel.

I was diagnosed in October and started with Prednisone which brought me a lot of relief, about a month later I started Plaquenil but I can't say it has really made much of a difference for me. As of Monday I have also started on Arava for the joint pain. I thought I was doing pretty well on the current meds because I feel so much better than I did before the Prednisone, but I am still in pain most days and my blood work indicates lots of inflammation still so the Rheumy wanted to take a more aggressive approach.

My main symptoms are joint pain, occasional rashes, mouth sores, numbness/tingling, and fatigue. I also seem to have Raynaud's going on now. My blood work came up with ANA 1:620 but nothing for a specific AI disease.

Glad to meet some fellow UCTD'ers!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 3/19/2015 8:43 AM (GMT -6)   
UCTD usually means that your symptoms do not give a clear picture of a specific disease. It is the "I know you are sick but don't know what it is" diagnosis.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/19/2015 11:21 AM (GMT -6)   
dashlink said...

I have UCTD too- or at least that's what my forms officially say. I love what you say about every rheumy appointment being like opening a cereal box acquiesce! That is exactly how I feel.

I was diagnosed in October and started with Prednisone which brought me a lot of relief, about a month later I started Plaquenil but I can't say it has really made much of a difference for me. As of Monday I have also started on Arava for the joint pain. I thought I was doing pretty well on the current meds because I feel so much better than I did before the Prednisone, but I am still in pain most days and my blood work indicates lots of inflammation still so the Rheumy wanted to take a more aggressive approach.

My main symptoms are joint pain, occasional rashes, mouth sores, numbness/tingling, and fatigue. I also seem to have Raynaud's going on now. My blood work came up with ANA 1:620 but nothing for a specific AI disease.

Glad to meet some fellow UCTD'ers!

Dashlink, how long were you on prednisone? I think I would like to give it a try, but the rheumatologist didn't offer it to me.

Post Edited By Moderator (Lynnwood) : 3/19/2015 12:08:35 PM (GMT-6)


dashlink675
Regular Member


Date Joined Nov 2013
Total Posts : 21
   Posted 3/19/2015 7:19 PM (GMT -6)   
rockthecasbah121, I've been on 15 mg since October. I've tried to wean off it a few times but I haven't been successful. It is definitely worth asking your doctor if you can start at a low dose. I know it has a lot of long-term side effects though so my Rhuemy is very eager to get me off of it.

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/20/2015 10:56 AM (GMT -6)   
I read about people going like 5 days on it. I definitely don't want to become dependent on it. Why aren't you able to wean? Do your symptoms come back that quickly at the same intensity?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/20/2015 11:01 AM (GMT -6)   
Don't play with your prednisone dosages without doctor supervision!!! Stopping suddenly can cause dangerous effects, such as your heart stopping!!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

dashlink675
Regular Member


Date Joined Nov 2013
Total Posts : 21
   Posted 3/20/2015 11:33 AM (GMT -6)   
Lynnwood- great point! My my Prednisone dosage is completely supervised by my Rheumatologist- I have tried weaning off 2.5 mg at a time but my symptoms tend to come back within a few days. But, my inflammation is high and I'm still flaring even on the Plaquenil and Prednisone.

My rheumy has now started me on Arava in hopes that this will get my symptoms under control enough to finally wean off of the prednisone. The dependency and possibility of long-term use is definitely something you should discuss with your doctor if you should decide to try it.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 3/20/2015 12:51 PM (GMT -6)   
Lynnwood gave the right advice...do not stop suddenly without consulting your doctor. Also, do not taper on your own without supervision. Being on prednisone for a few days or weeks or even months should not make you dependent on it. It is not an addictive drug.

The problem is two fold. First, that it might be what is suppressing your immune system and that requires a certain dosage and when you go below that your immune system kicks up. Second, if you have been on higher doses for a long time....several years typically, and you try to taper but feel terrible below a certain dose of say 10-15mg it might be that your adrenals are having trouble kicking in to produce cortisol. Pred is the synthetic version and you need 5-7mg daily to live. In some instances adrenal glands are atrophied and can no longer produce cortisol and you have to take a low maintenance dose (5mg or lower) of pred the rest of your life but these are extreme cases and most doctor know about avoiding this problem today. Not so much in the past.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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