Uctd experience please

[Buckley123]

Hey guys how are you all

I was wondering if you have uctd could you take the time to tell me your experience I would very much appreciate it ?

Lots ❤️

Jade. Xx

[Hidden]

Buckley, what kind of things do you want to know? Currently my doctor is calling mine UCTD/Latent Lupus? I’m still new to this diagnosis so I don’t totally understand it, but I’ve been seeing different doctors for 4 1/2 years for what has been going on with me. Many things in the past that I thought were individual problems, I’m now realizing we’re actually bits and pieces to this puzzle. But I’d be happy to tell you, the best I can, what you’d like to know from my part.

[Buckley123 in reply to Hidden]

Hey 👋

Just symptoms progression treatment any thing useful really I have brain inflammation too and my blood doesn’t match anything but my neurologist is certain so just trying to get more knowledge as it is our main power xx

[Hidden in reply to Buckley123]

I really don’t know what to say without becoming too lengthy (and bore you).

I’ve had a terrible energy problem for decades and thought it was anemia (had it in junior high school). Had rashes and facial swelling for a decade or two and thought it was stress, bad dental work, whatever. Always have had aches and pains due to scoliosis, so marked everything off to individual problems. I have 5 kids 7 1/2 years apart, so I thought that had a lot to due with fatigue and stress when they were all teens 😂.

Just under 5 years ago (the first week of the new year) I woke up thinking I had the flu, made it downstairs to the couch and passed out. I hurt EVERYWHERE! All my joints, muscles, tendons. My head. Ugh! Not the stomach flu, but the non stomach kind. I thought, ‘ok, maybe the 24 hour kind and I’ll feel better’. Three days later I’m still doing the same thing. Waking up later than usual, making it as far as the family room downstairs, and passing out. I would wake up maybe once or twice for anywhere from seconds to, no more than 20 minutes during the day. I hurt crazy. My body, my head, and just super fuzzy headed. So, obviously not the 24 hour flu, nor the 3 day flu. I’ve had flues as long as two weeks, but when this went past the two week mark without letting up, I thought, ‘what on earth is going on?’ It took 4 months of this until I finally had a good day or two to start trying to figure things out.

I started off trying to get a hold of a nutritionist a friend had used. No reply until weeks later (their answering machine had broken?) Time spent researching other nutritionists, corresponding with them, checking with my insurance to see what they would cover. Just a few good days, or hours between feeling like death, and using that little time to try to find help.

Then, one day my husband came home from the gym with the name of a doctor who dealt with holistic. She wasn’t a medical doctor, but a doctor in food science who got her degree because one of her sons is autistic.

Anyway, she led me to a local nutritionist. He was awesome. But still trying to deal with things as individual problems not a whole picture. Bloodwork came back that I was prediabetic (both my parents had type two), that my heart was bad (the lab added a note that I was looking at a severe to fatal heart attack anytime within those two years-that was a shocker!) and a suspicious liver, and possible kidney problems.

I changed all my eating habits, which weren’t horrible, but weren’t good either. Typical American eating. Fast foods, snacks, etc. Though I was probably a lot better than most, as I’m not a big fried food person or potato chips snacker.

Anyway, I cut out all fast food (all!), no soda pop, no fried food (which wasn’t a big deal for me), dairy (that was a big deal! I loved milk, cheese, yogurt, etc.). The only meat I’ll eat now is poultry and fish (fresh wild caught only) and shell fish. I was already a veggie eater but upped my intake of veggies. Had already changed table salt for sea salt a few years before. Added suggested supplements, etc.

So my blood work kept coming back poorly. I then went to an endocrinologist. He put me on MetFormin and a statin drug, which I only used briefly. It took three years but my blood work in those areas finally came back clean.

I had gained weight during the four months of crashing and had trouble getting it off but finally did and thought I was home free, for about a year and a half, when, boom, I crashed again! Went through feeling the same as before, but this time my throat started closing up, and I kept having bad chocking episodes. About a decade ago I was going through this and they stretched my esophagus. It was a bad experience and they damaged vocal cords. The doctor thought I needed to do this again (I know people that have had it done 3 times!) but I can’t imagine it’s good to keep stretching it, so I was reluctant (and thankfully so). But when you are chocking, it’s terrifying.

I went to my GP, I had also started a horrific rash on my neck by then. Super ugly and embarrassing. My entire neck was inflamed.

So my GP told me I had AI and gave me a treatment to start. After about 3 months of following the treatment, but it not helping, I went back to my GP. He told me that out of all his patients, only 15 had AI, and that all the others were helped by this treatment, so he said mine was more serious. He told me there were two categories; allergist and rheumatologist. He said he’s send me to the allergist first and hope that was enough. Oh, and he took me off all wheat products.

So, I went to the allergist who tested me and I have 19 food allergies (mostly very common foods), so that was more food I had to give up. And he discovered 5 environmental allergies (things hard to avoid).

He was suspicious of Lupus, so he sent me to a dermatologist for a immune florescent biopsy. When I got to the dermatologist, he didn’t want to do that test even though he knew that’s what I was there for. He insisted on cutting a slice off my neck for the biopsy, and before I could say yes or no, he froze a mole on my chest and started trying to up sell me on his skin cancer clinic (I don’t have skin cancer, but apparently he felt himself an expert on it and wanted to push this). I was a bit miffed. Anyway, when the lab results came back, it said a chance of Lupus and they suggested an immune florescent biopsy be done (Ugh!). I never went back to that doctor. So, the allergist referred me to a rheumatologist. The first two visits were with her NP, which was fine. The third visit they told me I’d be seeing the doctor. Great. But then I didn’t. I only saw the NP. She just asked me the things she had gone over before. I kind of felt as if she really didn’t know what else to do on her end. She did have me get more bloodwork and a couple of ultrasounds, but other than that, by my third visit with her, she didn’t have anything new to ask or check. So when I made the fourth appointment I asked to see the doctor. They said ‘absolutely’.

The day of my fourth appointment I felt horrid. And I had about an hour’s drive to the doctor. I got there, checked in, and asked ‘I’m seeing the doctor today?’ I was told yes. They called me back about 20 minutes late and on the way to the exam room I asked the nurse ‘I’m seeing the doctor today?’ She confirmed I was. I sat in the exam room for about half an hour (now almost an hour total passed my appointment time, and I just want to lie down somewhere.) I texted my husband to ask if I was foolish to sit and wait. Just then the receptionist came back and asked embarrassingly ‘ the doctor hasn’t been in yet?’ When I told her no, she moved me to another room next to the one I was in, and left the door open this time. She said the doctor would be sure to see me. About 5 minutes later, they put a newly arrived patient into the room I had just been in. About 5 minutes after that, the doctor came down the hallway, looked at me and nodded a hello, then went into the other room with the newly arrived patient. Just to be sure, I waited another 5 minutes Incase she was just retrieving something from that room for my appointment, but no, she was now having her appointment with the newly arrived people.

So, to be polite, and because it was almost their lunch hour, i went to the front desk to tell them I was going to go home now. I wasn’t making a fuss, I just didn’t want them to wonder what happened to me and go searching.

The receptionist was on the phone and turned and told me she’d be right in with my shot. ‘My shot?’ What shot? I wasn’t told anything about a shot, and I hadn’t even seen the doctor yet, so what shot? I explained that I just wanted to let her know I was heading home. When she realized I hadn’t seen the doctor yet, she tried to talk me into staying. I explained it was already more than an hour and a half past my appt time, I wasn’t feeling good, and had an hour drive home so thought it was best to leave. That I wasn’t trying to make a fuss, just wanted to let them know I was going. She kept trying to keep me there, insisted on going to get the doctor. I asked her not to interrupt the other patient’s appt, but she did anyhow. But the doctor didn’t come out with her. So she kept insisting I stay and talk to the doctor. It was embarrassing. I kept telling her I really just wanted to go. The doctor finally came out from the room and up the hallway. She was writing on a clip board, and when she got to me, looked at me but didn’t say anything, then walked off. It was so odd. Then the NP came around the corner and apologized to me for running behind. I explained that my appt wasn’t with her and she needn’t apologize.

I Finally got out the door. Halfway home the receptionist called and started apologizing and taking the blame on herself. I told her she had no reason to apologize. She wanted to reschedule my next appt, but I told her there wouldn’t be anymore appts with me.

So I had just barely gotten home when the NP called. Same thing. She wanted to take the blame for what happened. I retold her it wasn’t her fault. This really was so awkward. If only the doctor herself would have man upped and apologized, but having her staff take the blame, to me, only confirmed she wasn’t who I wanted for a doctor.

So, at this point I took a referral from someone who has Lupus. My husband is a cop and one of his guys’ wife has Lupus. She’s about a year ahead of me on going through all this but now has a definite diagnosis.

So I went to her doctor. My first appointment I had to cancel because I was too sick to drive safely. The next appt my husband took me so no matter how I felt I wouldn’t have to cancel. This appt, the poor doctor was sick with the flu. The appt was super short. The nice thing about this doctor was that she wanted copies of all my medical records and labs to go through a head of time. I was happy she was that thorough. I have copies of EVERYTHING! But when I got the copies from the former rheumatologist, luckily I had read through them, because there were 4 very important mistakes they had written in the notes they made each visit. The worst of all was that I was a former smoker. I’ve NEVER been a smoker, and that only confirmed how awful this other office was! Ugh!

I had sent these reports to the new doctor immediately. So anyway, she thought that instead of Lupus, I might have Ankylosing Spondylitis. She sent me to get more bloodwork and some Xrays. My next appt I was told I did not have Ankylosing Spondylitis. That’s when they gave me the UCTD diagnosis/latent Lupus.

My last appt I showed them this large brownish/blackish bruise thing, the size of a fist, on my back, that had been coming and going over about 4 months, but now seems permanent. Now it gets darker and lighter. The doctor said she’s never seen such a thing and referred me to a dermatologist (not the one I went to before) for a biopsy. That will be mid Nov.

I was doing all I could to try to prevent going on meds. I always worry about the side effects of meds. But finally went on hydroxychloroquine about 4-5 weeks ago. My husband has been very understanding, but I feel like I am ruining his quality of life along with mine, so I gave in. The doctor said it would take at least a month before the benefits were felt. I’m still waiting.

So that’s everything. Probably way more than you wanted to know? But that’s been my experience (so far).

I hope that helps whatever it is you were looking for? I hope I didn’t put you to sleep?

And I hope you get the proper help you need. You are too young to have to deal with anything but living your life. All my best to you.

[Buckley123 in reply to Hidden]

Thanks so much for your reply You see I can understand why you have uctd diagnosis I just don’t for myself I have issues with my eyes and brain joint pAin headaches blushing of the cheeks thyroid antibodies twitching muscles dry eyes swollen Tongue issues with my sinus neck throat muscles feet Tendons.

I too hAve bad energy levels.

I have Pernicious anaemia b12 deficiency.prcos

And three kids so I do Understand that you can give it many different labels many different reasons for being 💤

I think you are right with the food is very important have a good diet I will take on board what you say you have not bored meAt all I appreciate you taking the time to write such a lengthly replyTo help me understand the UCTD diagnosis xxx

[Hidden in reply to Buckley123]

All my best to you. I hope they have things figured out for you very soon. You have a long and happy life you need to enjoy with your little ones. All my best to you!

BK

[Buckley123 in reply to Hidden]

Thanks bk keep in touch with you posts lovely to hear from you look after yourself I hope it’s smoother sailing from here for you xx

[Hidden in reply to Buckley123]

Ahhh, thank you! Ditto!

[Gmagolf in reply to Hidden]

I’m exhausted just reading what you are going through. You are a lot nicer than I would have been. FYI I have APS and possible lupus. I’m on Plaquenil. Took about three months to work but the longer I’m on it the better I’m feeling. Hang in there girl.

[Hidden in reply to Gmagolf]

Thank you! So glad to hear the Plaquenil is working for you. Your remarks give me hope. My stomach cramped the first two weeks, the next two weeks I felt good, but sometimes I have periods of feeling good anyhow, so I wasn’t sure if it was the meds. Last couple of days I’ve started to feel bad again, and face is rashing up. Glad to know it took a few months. I’ll keep it up and look forward to great days ahead. Thank you Gmagolf.

[Gmagolf in reply to Hidden]

🙏❤️

[KayHimm]

I was diagnosed with UCTD 36 years ago when the syndrome was just being recognized. I was told I would likely continue to have mild disease with fevers and fatigue but would not progress to serious organ involvement. As is typical of UCTD disease, that has been the case. Though I have had periods when there were possibly more serious things like pulmonary hypertension and kidney disease, those complications proved negative. I have developed autonomic dysfunction and low level CNS involvement. I get only supportive treatment for both, though I am allowed low dose prednisone for some neurological symptoms.

The literature consistently describes that only 30 percent of people with UCTD go on to develop a classifiable autoimmune disease. That usually happens within the first three years. So I am in the 70 percent. The absence of severe kidney and brain disease is one thing that sets UCTD from lupus. More UCTD go on to develop scleroderma than lupus.

It is a hard concept to wrap your mind around, right? But the rheumatologist who described the condition years ago seems to have been correct. It is its own thing, with symptoms of lupus, Sjogren’s, RA and scleroderma.

All autoimmune diseases can overlap and morph into another one. So no matter what box they put us in, they have to be vigilant. You have excellent doctors who have seen a lot of lupus, Sjogren’s and UCTD by now, so they will take good care of you as they continue to do tests when needed.

Hope my account is helpful!

Xk

[Buckley123 in reply to KayHimm]

Aw Kay your account is always helpful without your comments I don’t know where I would be you have calmed me a lot I appreciate you always taking the time to write to me even if you want to shake me 😂😂😂🤦🏼‍♀️❤️

[Jmiller623]

Hi Buckley! Story starts about 10 years ago when I got mononucleosis. Took me about a month or two to get over this. Lots of fatigue, nonspecific leg rashes and lymph nodes. 5 years later I got pericarditis. Took me another few weeks to get over this. Soon after this, I started to develop Raynauds with waxing and waning lymph nodes. I then got a really bad bacterial pneumonia 2 years ago. Afterwards, I was pretty fatigued, having night sweats, looked washed out but chalked it up to 80+ hour work weeks. Once I had nodes in my neck, bad livedo reticularis and just couldn’t keep up, I asked for help. Lupus anticoagulant and elevated EBV titers came back elevated, low c3, urine with some white blood cells/blood without infection. Lupus anticoagulant repeat was still positive while on high dose steroids. Lymphoma was ruled out. I saw a rheumatologist at this point who diagnosed me with UCTD since my ANA was negative and none of my other antibodies were positive but I obviously had various manifestations of multiple autoimmune disorders including marked esophageal dysmotility and severe GERD. I started Plaquenil and was on steroids for about 5 months.

Fast forward about a year after UCTD diagnosis. I go to see Dr. Michelle Petri at Johns Hopkins and my ANA turned low positive. C3 and C4 are always low low normal. Always have low lymphocytes. Along with clinical criteria (malar, pleuritis, livedo reticularis, etc), this earned me systemic lupus diagnosis. My home rheumatologist would still like to call it UCTD as my dsDNA has never been positive. I’m in lupus limbo.

My current Med regimen is Plaquenil 300, aspirin 325, allegra twice a day, Flonase daily, atenolol 25 for palpitations/POTS, buspar 5 before meals for esophagus problems.

Hope my story helps you a little! UCTD is frustrating because docs write it off as a catch all when they don’t realize that it is it’s own entity and diagnosis as KayHimm has said. I do hope you find comfort in knowing you’re 100% not alone.

[KayHimm in reply to Jmiller623]

We are so similar. Rheumatologists have different styles. Mine also does not like to diagnose lupus without high positive ANA, low complement or anti DNA positive. Your pericarditis sort of pushes you into the SLE diagnosis, don’t you think?

It matters more in terms of monitoring, I think, or research. I find it funny that rheumatologists do not actually seem to get bent out of shape about the box we are put in and are more interested in appropriate treatment.

Xk

[Jmiller623 in reply to KayHimm]

I think I have mild/moderate lupus and have had it for a very long time but the neuropathy stuff is new. My rheumatologist can’t completely pin it on lupus since my ANA/dsDNA antibodies are negative during my worst times as validated by testing. I call it lupus plus.

I couldn’t agree more with your statement. I also think diagnosis helps with prognosis which likely facilitates a more linear conversation with our physicians.

[Lizard28]

Hi, my journey started about 8 years ago, my Rheumy hopes one day to join the dots and give me a diagnosis. I will try to be brief as it’s a very long story. My first symptom was like the worse flu that wouldnt shift. I couldn’t walk without my legs giving way, lost weight, couldn’t eat and slept all day. I attended the infectious disease unit clinic for a year and at the end was told it was probably a new type of virus, my bloods were all over the place and they just didn’t know what was wrong. My second flare was problems in my head, was diagnosed or misdiagnosed with temporal arteritis the inflammation in my head was very serious, saw a Rheumy consultant within a week, was put on steroids for around a year but after a biopsy they decided it wasn’t TA. Had to stay on steroids though. My ESR was through the roof. More flu like episodes, aches and pains, rashes, fatigue. Next serious one was that I couldn’t breathe after walking a few steps. This time it was pneumonitis, inflammation in my lungs, 11 long days in hospital, now this is supposed to be caused by an allergen and after many tests they didn’t know what caused it. Again another year on steroids. Two more hospital stays with pneumonia, aches, pains, lost more weight, had steroid jabs, was put on hydroxy to try and help my immune system. I was really suffering with dry mouth and eyes throughout this time but bloods were not positive for Sjögrens, my next serious illness was NH lymphoma. When I told doctors that I have a connective tissue problem, they seemed to think that it could be linked and was confident it was lymphoma, they were right. A year on from that, I have terrible pain in my hands and feet, now also have a diagnosis of gastroparesis which I’m still trying to digest (excuse the pun) I did have a very high RF in my bloods but at the time not a lot of pain. My eyes and mouth are still very dry, my skin is also very dry and I have to put steroid cream on it carefully to take the thickness of it away. My bloods are getting checked in a few weeks by my haematologist and Rheumy together to see if anything new starting. My lymphoma came back after six weeks in remission but this time no treatment yet, just watch and wait.. it’s a very strange illness, my kidneys have also been affected and at one point was getting checked every 12 weeks. It just seems to randomly go round my whole body and I don’t know where it will strike next. They usually start when I get a cold, it sets my immune system crazy. Wish you all the best in your journey with UCTD. I was told mine is MTCD?? At the time I thought it was a rheumatologists way of saying it’s a “virus” I was so fed up getting fobbed off with “ I don’t know what’s wrong with you.”