Hi, I have had UCTD for over 20 years, was told it was nearly all and any of the autoimmune diseases and felt I was stuck in a, it is it isn't loop. The many labels hung on me, then taken off my a different doctor all but made me feel like a hypochondriac. I have had high ESR readings always, CPK high, double stranded ANA tests, in fact, all my blood tests are bonkers. My husband says I am descended from aliens, and at times it sure feels that way. One of my docs couldn't understand why a diagnosis that stuck was so important, maybe only those who have had multiple diagnosis can really understand the need to know just what keeps going wrong with out bodies. I was medically retired 8 years ago and miss the old me and working and dancing and drinking and all that jazz so much. I feel like a puppet with broken and very knotted strings, but I am still here. I have tried most meds but am allergic to most. Last try was Methotrexate which made me feel so lethargic (even more than usual) I chose pain rather than live like a zombie. I have recently had a bout of SVT's and ended up in A&E and wondered if anyone else has had these? I have awful chest wall pain and muscle spasms in my side and frequent bouts of tendonitis, I have mild hypermobility. Right now I have a Sjorgens thing going on, blisters up my nose and in my mouth, my teeth are becoming loose as the connective tissue becomes dodgy. However, I try to bear in mind there are always those worse off than me, at times I allow myself a short pity party. I really think more needs to be taught to new docs about autoimmune diseases and not just the main one's. While UCTD usually means no full blown disease, the multiple effects of all is a pain in the everywhere. Right now opiate pain meds are my friend. Nice to meet everyone, oh and I live in Scotland, not far from Elgin if anyone else is nearby.
Damned UCTD: Hi, I have had UCTD for over 20 years... - LUPUS UK
Damned UCTD
Hi Serenarian
I can fully understand what your saying as I too have had UCTD for over twenty years and at times have been made to feel like a Hypochrondriac!. I've been lucky compared to you in that I haven't had doctors giving different diagnoses and then withdrawing them. This label has stayed constant . What you have had is very damaging!. Recently I've read a very good explanation of UCTD, I hadn't realised or been told it's more of a diagnosis than I thought and if you think about your body trying to decide which CTD to be out of a possibility of three , it's not surprising we can feel so ill!. It did say the longer we go without a change to a known CTD the more likely we stay with this label!.
It's a shame you are so allergic to the drugs. Have you tried steroids?. They've been so good for me but I worry about side effects!. They're particularly good for the chest pain.
I hope you find relief soon. X
Hallo there. I live in Isle of Lewis and have been given diagnosis of lupus a month ago. Regular visitor to Raigmore
serenarian Near Elgin..a charmed location!! I'm not sure if UCTD is not a full blown disease. It means you got several going instead of one well defined disease. I know people are badly affected by UCTD with serious organ involvement.
curran
Isle of Lewis! I cannot live in a remote island no matter how beautiful it is - how do you manage? On the other hand, perhaps, you get used to it with your family support and care? The stress level might be lower than living in the main island (no traffic queues, slower pace in life, less pollution, fresh fish, supportive community, etc) But I digress. I sometimes "dream" about moving somewhere quiet and isolated then the reality kicks in. Sorry for going off topic.
Hi sererarian
I do so feel for you, and also know how it feels to have so many diseases all in the Same body. If I have to see a new Dr they are amazed I walk into the room as they are expecting a very old lady hobbling in ok I do use a stick but to look at me you wouldn't know how bad it is. There is the Lupus, Addisions,Hughes, shoguns,diabetes, Astmer fibrimyalgar ins and I think a few more.
All there labels they just love to put on you. I like you have tried so many different melds and can't take any of them they all make me so much sicker if that is possible
Saying all this and after two nights in a row without sleep ( high steroids due to yet another flare) I try to keep positive. It's so hard at times but what the hell I may as well make the best of this life. I am certain I am not from this world as I just don't fit into it at all in any way
I try to do healing if I have the energy I love my crystals and work with Angels and many guides I just wish they would be able to do more to help
Sorry it's so long just strung out on steroids and raving
Sorry don't live close I am Down in suffolk
Hello from the US, Serenarium. I empathize with your plight. My SLE was recently downgraded to UCTD/MCTD once again and I'm happy: fewer dire systemic consequences to fear--maybe I have all associated diseases and stndromes, and after 30+ years all of my symptoms (intractable pain, blinding Sjogren's, hypothyroid, fibro, swolllen knees, fatigue, IBS) have abated due to 200 mg. per diem of generic Plaquenil, mfg. By Praxo. I gather you have tried Plaq? I have complained long and loud about its poisonous side effects, which ceased entirely at the six week mark. I feel like a new person--not "cured" by any means, but functioning. If the foregoing sounds like an advert for use of Plaq in UCTD/MCTD, it is. If you are able to give Plaq a go, and hang in with the initial misery, it is truly a wonder drug for UCTD. Best wishes, molly
Hi Molly,
I too have found that plaquenil has been helpful to some extent but hasn't been enough by itself to control symptoms. I've never fully been in remission since things started getting bad. But my current rheumy moved to up to 500mg a day in the plaq and I noticed a huge difference in not as much hair is falling out and a little less swelling in my hands. I still am on a high steroid dose as well as NSAIDs and biologic infusions. Do you still have to take more then the plaquenil? At first it seemed like a miracle drug for me I got so much more energy and almost felt like my old self. But then as the disease has progressed it hasn't been enough.
Terrier_Lady, Having only less than one week ago acclimated to 200 mg. of Plaquenil, I shudder to think about what it must be like to take 500 mg. At this point I take two aspirin per day, 2 Benadryl tablets for seasonal allergies, and 2 Savella per day for nerve pain in my right gluteal area--the final for an old gym weight-lifting injury. No corticosteroids, though, and miraculously, no levothyroxine or liothyronine, since after two weeks on Plaq apparently rebooted my thyroid! My ANA is still negative, which I gather is why my Dx falls short of SLE. You or someone used the adjective, "shapeshifting," which is precisely what this disease does. I hear people say, "well, at least you don't have [xyz kind of cancer]," which makes me want to scream. Sometimes I bite people's heads off. Thirty years of not knowing which disease/syndrome will present tomorrow is emotional terrorism.
Please let me say how much I admire the courage of everyone who contributes to this discussion. Each of us has fought our own individual battles with multiple crippling conditions. Many of us have taught ourselves enough to pass the rheumatology boards. Here we need not be alone, and I am learning more every day. 💙
Wow that is so amazing that you have been able to stay cortisteroid free. That is the medication I want to be off of the most. It has changed my entire body. I've been at 15mg daily for the last couple years. After we started the Benlysta infusions the hope was that I could come off the steroids but everytime I try I get so bad again. Hoping maybe as fall hits I can try again as for some reason summer is just horrible for me. I stay inside and try to stay cool but it's like the allergies or just something in the air has me in a bad state all summer.
I totally get what you mean about people saying things like it could be worse or at least it's not cancer. I get so mad sometimes and want to say no I just get to live every day in agony and have a increased risk for cancer now. Don't get me wrong I'm greatful I don't have cancer but sometimes I feel those that battle cancer have a better quality of life then those of us with chronic illness. I just had a friend that had advance colon cancer. And while it was scary she was out walking for exercise even during her chemo. And now she is back to running marathons. I can't even go grocery shopping on my own. And it seems like with chronic illness people always ask how you are but they don't really want the answer. They don't understand they keep waiting for you to say I'm all better. But we never get all better. The only person who seems to understand is mg husband. He even told me one day he thought this is worse than cancer because we have no end in site at least with cancer they can try and get rid of it. I'm so greatful for him, he is patient and alway willing to care for me, even though I'm not the girl he married and our lives have so drastically changed. Sorry for the rant. It just seems it's only others with chronic illness that understand. Thanks for the info and I hope you never have to get on steroids.
Hi terrier lady
I'm sorry your struggling so much with your health but I do agree with you that people diagnosed with cancer get a lot more help and support!. I don't like thinking like that as cancer is serious but we can be battling severe pain on a daily basis with only friends and family support ( some people don't even have that) and they can't fully know what it's like!. This forum is fab as we all understand!. I hope your treatments benefit you more, your taking a lot. X
Hi Molly2003
Please don't feel your Lupus diagnosis has been downgraded to UCTD/MCTD!. With UCTD being your body trying to be one of three different CTD's, there's a lot there we're having to cope with. No wonder we can feel very ill!.
Your Consultant should be more definitive about whether you have MCTD as a particular antibody is found in the blood for it.
Hope your as well as can be. X
Seranarian this could be my story - so sorry for you as I do know exactly how you feel about the endless uncertainty, allergies and intoerences to drugs and Being made to feel a hypochondriac by certain doctors. I too have a high ESR and have a formal diagnosis of RA and hypothyroidism - but in some ways this has held up my treatment because the RA synovitis is in remission but nothing else is - but treatment options follow RA protocol and lack of organ involvement to date means that I'm only able to take a low dose of Prednisolome now.
We are moving from one of the North isles where we've lived for 26 years to Fife in three weeks time - and hoping that I will be seen more often and treated by a new rheumatologist with a special interest in Vasculitis and connective tissue diseases.
My present ARI based rheumy has been very helpful in referring me over these last few weeks but has always taken a very cautious/ conservative approach. I know I need someone to take a fresh overview over my case. I'm under a neurologist too as my so called RA has neuro features and I'm told it has yet to reveal itself fully so it's a case of watch and wait having tried and failed to tolerate 4 DMARDs to date. Spent too much time as an inpatient in hospital this year.
I'm not sure which hospital/ clinic you attend from Elgin but I hope you have confidence in your team and good support at home too.
You certainly should never be made to feel like a hypochondriac - so very wrong. There are plenty of others here with UCTD and MCTD as you can see. The changes in diagnosis, along with shape shifting disease patterns are the worst psychologically I feel. Anyway we are all here to support you so I hope you feel less alone now. This community has always been wonderfully kind and supportive to me.
Twitchy
Your story sounds a lot like mine. I'm so sorry to hear of the hard time you are having. My blood tests are also bonkers as they have been abnormal for years but don't look normal for even regular lupus blood. So it's taken forever for me to find a rheumy who new what to do with me. Have seen quite a few and I would always get sounds like lupus/uctd but then because I wasn't typical at all for even that kind of case they wouldn't really listen or treat me agressivly while in the meantime I was completely losing my ability to function. My blessing was my long term gp who I had been going to for so long that she saw the drastic change in me and kept pushing for a good specialist. Now even though I have a good rheumy it seems like he isn't all sure what to do with me either and tells me all the time that my immune system is more complicated than just lupus which my infusion nurses say means I have overlapping diseases and he doesn't know what they all are. I also feel like sometimes he doesn't take it seriously enough when I talk about the horrible chest pains like you were describing because he's hoping that it's just costochondroitis and is a bit in denial about how badly it is affecting my body. This really is such a hard disease/diseases to have. I had a flare about 3 months ago and since then my chest pain has changed and I can't get my heart rate to go back to where it was and the shortness of breath is terrible. And then I ended up with a mastitis infection which I believe to be lupus mastitis which is basically just caused from the lupus affecting your breast tissue. But I guess it's pretty rare, so they don't want to say that's the cause and I'm the first person they have had with this complication. The ongoing joke with my doctors is that I can't quite be normal in anything. If there is something rare or strange seems like I will be the one to get it. Right now I'm on Benlysta. They are biologic infusions I have to get monthly and the only new treatment for lupus in over 50 years. I can't tell you that it has made me functional or back to my old self as I don't think anything is going to do that. But it keeps me from being really ill and the months it's working well I have a few good days for the months where I might have a hour or two on those days that I might be able to vacuum part of the house or something. Still in pain and like you pain killers are the only way I survive the days but I've noticed a reduction in pain since being on the infusions, so at least it's a little easier for the pain meds to manage. Before the infusions I was so sick and in so much pain all the time I felt like I just needed to be admitted to the hospital and between the fevers, fatigue and weakness I couldn't even walk across the house. Since the infusions have been working I can at least have times I feel somewhat like a human being just being at home. Mind you I have to rest all the time and if we go out which is very rarely my husband has to push me in a wheelchair if it's going to be for more than a few mins. But I've noticed I can enjoy little things here and there again. I think that's a big part of these chronic illness is learning to accept our new normal and find joy in the things we still can. I know how hard it is though as I really do miss the old me and all the things I used to do. Kind of a huge identity change, it was so hard accepting it. Some days I still struggle with it and feel like I'm grieving the old me and my old life. So all that to say hang in there you are not alone. We are all here for each other and maybe the infusions would help you. Hugs and prayers.
Hey Serenarian, I was told I had uctd, and then had it all explained via leaflet about lupus mctd, as there is absolutely no information that I could find about uctd. Tramacet (tramadol) has saved me recently, and like everyone just trying to "get on with it" (as so many people say when they are talking about their own condition that isn't a lupus one). Good explanation of being a puppet with broken strings. I am flaring just now - supposedly in 'remission' (borrowed word from cancer patients) - and have not had an infusion since March. I was scared about being left to get on with it until my next appointment in November! And had to go to the docs this week, crying, as I didn't know what to do to get help. I contacted the rheumy nurse who has condescended to give me a depo injection next week, should I be flaring (in her opinion after she has examined me)! - so I totally feel like a hypo also, I have lumps on my lumps, and all my muscles are swollen too, so I should know when I am flaring!!! I did say to my gp that I feel like I am lost in the post, as there is so much information lost at consultations with doctors, through paraphrasing and them forgetting what has been said when they first start questioning you to when they are summarising for their report, then your gp doesn't really know anything as they aren't specialists, which is understandable kind of, but awareness would be a fantastic breakthrough. I was not complaining, just stating how it all comes across. I cannot open my hands up properly, which is the most frustrating and makes me want to cry, as I can put up with anything except lack of mobility in my hands. You are quite entitled to a "pity party", its the only way to keep sane me thinks. I am in Scotland too. You are so right about not having the 'full blown' lupus, as having so many horrible things happening simultaneously all of the time is hellish, it is a constant battle. And now I will go to bed with a song in my head.... puppet on a string. Maybe one day we will get to be 'a real person' like pinnochio? Keep fighting.xxxxxx
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